4 Years TSW

Hi everyone, I feel I owe you a post and an explanation as to my whereabouts!

Can I just start with saying thank you so, so much to anyone who has asked after me, anyone who has taken the time to email me, comment or message me on other social media. I am so grateful for you all <3 For those who have gotten in touch with me who wanted answers I'm so sorry I've been unable to supply them. Life at the moment is pretty hectic.

I've been wanting to post for a long time but never quite knew what I was going to say. My 4 years TSW anniversary was May 22nd, I was looking to post then but just didn't have the time or the will. It was only really this morning when I woke up a lot earlier than anticipated that I happened to look at a message on Facebook and discovered a whole section of unfiltered messages that contained an overwhelming amount of unread messages, dating all the way back to 2012! I am so annoyed that I've only now just been alerted to them and I can only but apologise for not getting back to you. I will say as well though that I don't add people I don't know to my personal Facebook account - if you want to talk to me I'd prefer it you emailed me. Alternatively I guess I could make a Facebook group...

So anyway. How am I? How is my skin?

I'm doing really good at the moment. I've landed a full time job in the city, which means hourly commuting each way. I'm in the process of buying a house, and have been since November so you can only dare to imagine the stress that I've been under! That is actually another reason I didn't want to post yet - I was hoping I could update from the new house but hey ho - life just doesn't always follow a plan.

At current my skin is pretty good. Dry, but good. I'm still taking Ciclosporin for now but I hope I can come off eventually or even start on Dupilumab, we will see. It hasn't been plain sailing though, when I first started at my new job I had a horrible flare which was really quite embarrassing after being good for a few months and having to meet new people. It keeps coming and going but it's bearable and I also put it down to the stress that comes with the house buying! Not only has my skin been bad but I've also been experiencing other unexplained health issues as well which we're currently trying to figure out. Stress is a funny old thing.

Another thing I wanted to mention is heat - it's really hot in the UK at the moment and I'm OK. I can deal with it now. I no longer come out in a full body heat urticaria rash, I'm starting to feel more confident that that is a thing of the past and was fully related to topical steroids, but until I flare again I'm not going to say that for definite.

There are moments that have me stopping and thinking, things now that I've been taking for granted, that I couldn't even dream to do when I was in the deep grasps of TSW and it's just astounding to see how far I've come. I have a full time commuters job, I can tolerate heat, my skin no longer comes off in gigantic flakes that compare to sunburn peel, I don't have to vacuum my bed, I can take a 5-10 minute shower and be ready within an hour. I can stay at other people's houses without thinking of myself as a hindrance or worrying that my skin or routines will be an issue. I'm no longer housebound. Touch wood I've not had a skin infection or a herpeticum outbreak, in fact I can't even remember when I last had one!

The only things that are still problematic for me is the aforementioned dry skin but even then it's not really that much of an issue - it'd just be nice to have suppler skin but dry skin has always be an issue of mine since day one. I'm also not yet confident I could live with a cat but I think that could be due to lack of exposure, I only spend time with cats once every couple of months so it will be hard to build up a tolerance, but gone are the days of full body rashes and acute asthma attacks when I so much as dare to look in the direction of one. I also still suffer from dermatillomania but I feel now that my skin has cleared up there's not as many imperfections for me to pick at, but of course the tweezers still come everywhere with me! I also don't wear make up but I'm cool with it... that's the other thing, when going through such a traumatic illness you just start accepting your appearance for what it is. In my early 20s before the onslaught of TSW madness I used to wear make up every single day and when I became so ill it was a travesty, but over time you just accept that it's your face. It'll do.

And now onto the eagerly awaited awkward photos (that's the other thing, it's been so long since I've taken photos of myself I just can't haha!):

I decided to take photos in a changing room because the lighting is always different.

Ignore the scab on my chin... it was a spot but dermatillomania and that...

I woke up like dis

Awkward flabby tummy pic

So as you can see, dry but currently rash free!

Hope everyone is well and I promise not to leave it so long next time.

Also I was emailed about this giveaway to share with you all which we can use to celebrate my 4 years of being steroid free!; Win some Dermasheets for your bed worth $270!

Good luck!

3yrs Topical Steroid Withdrawal

Hey everyone!

Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won't say I'm healed... not by any means. But I am able to live life comfortably again and without much disruption.

My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.

I'm still on Ciclosporin but I've dropped my dosage to 250mg, down from 350mg, and though my skin hasn't completely cleared up, as it did the very first time I used it, it's still helping me on the days where I do struggle.

I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn't spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn't perfect and there are still refined foods in there but I am choosing more whole food options where I can.

I've also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I've never been into exercise as I was the fat, unfit kid at school who was self conscious and didn't care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting... but it got to a point where my skin just couldn't handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I'm pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I'm wondering if the cause is because I'm being exposed to other people's skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I'm hoping to improve on my skin tolerance the more I do it.

At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don't think it's a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I'm hoping in the not so distant future that I'll be able to get a cat. More time and exposure is required though me thinks.

Another thing that has happened, that I've talked about before - 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It's staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.

This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I'll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I'm not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I'll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!  

I also generally have more energy - whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can't say. But it's bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I'm no longer embarrassed for having the skinniest pony tail in the world.

I can't remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite... I'm so glad those days are behind me.

Some photographs from my skin hell journey over these past years:

 PRE-TSW

Weird triangle-nose face rash

Weird rash on thigh

Bruising on thigh from over-scratching

Same as 1st image but a different day

DURING TSW

Allergic reaction to staying round mum's with the cats

All greased up with my arms covered to stop scratching and ooze, and red rashes on thighs

A mixture of TSW/ MRSA/ Elephant skin

Swollen eye

During MRSA/ TSW period

The result of bad skin and skin picking compulsion (dermatillomania)

Rash

Eczema herpeticum and Cellulitis of the eye

Red sleeve 

MRSA/ TSW

Ooze

Leg sleeve

Development of Pompholyx

Tummy rash

Skin flakes

More flakes

Tight, hardened ooze and raw open wounds

Thigh rash

The tissue nightmare of constant ooze

Elephant skin

2014 - Thin hair

I have faith that my skin will get ever stronger. I fully accept that it will take years and that I may never truly heal because of the extensive damage that I have bestowed upon my skin, thanks to doctors and dermatologists who have misdirected me in terms of usage safety, but I will get there.

Hope everyone else isn't suffering too much. Happy healing!

32 Months TSW

Hi everyone,

How the time flies! It has been roughly 3 years since I set up this blog in order to spread awareness of severe eczema, then learning of steroid induced eczema or 'Red Skin Syndrome' and in this time I have had a staggering 330,000 blog views. Your kind emails and comments also mean the world to me as I am humbled to learn that my blog has achieved it's aim of spreading awareness and showing people that they are not alone in this. I am truly grateful for the opportunities that have been opened up to me and for those of you who share your own experiences with me to show that I am not alone.

Thank you.

In other news sorry I have been AWOL recently. I work full time now and find it hard to find the time and energy to write on here. But I am still here! Although something scary happened on Christmas day morning. My Google account was 'hacked'. 2 weeks of trying to get hold of Google later, to discover that Google had just decided to change my email address, thus locking me out of my whole account. Cheers Google! Never mind... It's all resolved now!

I bet you're all dying to know how my skin is? Well it still isn't exactly great. My face, neck and arms have recently flared and I think the trigger is stress related. I mentioned that I'm now working full time - it's still within the same company but it's in a different department and I'm learning a hell of a lot. There's only 2 of us in the department and my colleague had a week off after Christmas which was probably the worst time for her to disappear. Needless to say I struggled immensely, and hence the result is that my skin is a bit of a mess. But that was weeks ago now, I hear you cry. Yes it was weeks ago but now that I no longer have the adequate time to heal (read; laze around and do nothing), it's going to take a little bit of time. It is however slightly better today than it was though.

Rashy, dry and wrinkly!

Yes my brows need sorting. But I have some!! & I'm also noticing more baby hairs on my head :)

Splits on my eye lid creases

I am now officially vegan. Shane and I have seen the light and don't want to consume any more dairy - I stopped eating meat months ago. We even enjoyed a vegan Christmas, at both of our parent's houses and it was glorious.

My next step is to try to incorporate more raw fruits and vegetables into my diet, but it is hard to think meal-wise what I can eat for lunch at work. I work from 7am so am hardly in the mood to make meals for work. I've been enjoying the night before's left overs or pitta breads and hummus with tomatoes and spinach but I want to try to get away from bread and consume more vegetables instead.

I've been snacking on fruits - kiwis, blueberries, bananas, oranges and apples but find they don't sustain me for long. I can't take huge portions of these things either because I don't have much time to eat them and we're forbidden to eat at our desks so that's a bummer. I would take salads but the prep thing is the only thing holding me back - I haven't actually tried it but I imagine it wouldn't taste so fresh making it the night before? I don't know.

Breakfast is usually a variation of overnight oats or smoothies so I'm definitely getting my quota of fruits in there. I just need more during the day. Also considering probiotics now. Something I've been thinking  I'd try for ages but I don't want to pay an arm and a leg for them. Does anyone have suggestions of good but cheap ones?

Happy New Year Red Skin Friends!

Wow. It has been an entire month since I last updated this blog.

Let's start by saying Happy New Year everyone! I hope this year will be good to all of us going through topical steroid withdrawal, and to those who haven't started the journey yet, I hope this is the year you see sense and potentially save yourself from long term pain of steroid addiction.

I figured I would reflect on and talk a little about what 2014 had in store for me so that I can look back and see how far I have come.

The start of 2014 was great. I was in a good place, my skin was pretty decent. I was able to wear black clothing, go out with my friends more, work more full time hours and not have to worry about my skin.

This soon changed. The start of the year my other half was in a bad place mentally and we needed to get out of Lincoln and find him a new job where he could relax and feel appreciated for all his efforts. I was also yearning for change as Lincoln had become a bit stale and I felt ready to move on and go forward with life. He found a fantastic job in Leeds, and off we moved at the end of April. However even though I did not feel at all stressed as I was excited for the change, my body had other ideas and off again started the pain and misery of my second full body flare. I was gutted. I wanted good change, to finally get on with my life.

I believe it has to do with the change of environment but there is little you can do until your body naturally adjusts. So pain was endured and I had to begrudgingly take time off work. After a trip to the doctors where I was given an antibiotic that I had used numerous times in the past I woke up the next day having had an allergic reaction. I was shipped to hospital only to be told it was 'just my eczema' giving me grief. Even though it was obviously an allergic reaction given my face and eyes had completely swelled up, just as it does when I am faced with allergens. Funnily the swelling went away after I had ceased the usage.

I was then sent to the dermatologist to continue with treatment that I had received at Lincoln hospital which turned out to be a nightmare having to start from scratch as they didn't seem to be able to locate any of my previous notes. There was a big family wedding coming up in August and I needed something to control my skin, so after a lot of arguing that I wasn't going to use steroidal treatment we agreed to put me back on Ciclosporin even though I was apprehensive because it had failed to work the last time and I ended up with MRSA in 2013.

The Ciclosporin worked its magic, but only for a short period. By the end of October my skin gradually became worse and worse and I dealt with more and more infections. I'm still in this place now where I don't know when my next infection is going to occur but I feel it could just be around the corner. I have a follow up appointment next week with the dermatologist which I am not looking forward to but I will see if it is possible to carry out blood work for deficiencies.

There has been one excellent thing though. I actually went home to my family for Christmas this year and it was great. My brother also has a cat and I didn't appear to react for the entire duration of the day. I did however start to get sneezy at my mum's house but all in all I was ecstatic that I could stand to be there at all.

I really hope this is the year things start to look up for me. I would ideally like to be doing a different job that doesn't involve me dealing with members of the public on a daily basis, as this is contributing to my endless infections, despite my precautions to use hand sanitisers and the like. I feel an office based job would be better suited for my recovery and much less stressful overall. Yet without the relevant experience and my awful absence record I'm still going to be stuck for a long while yet. Ho hum. My absence will only get better if I have a better suited job so it is a bit of a vicious circle right now. I feel stuck in a rut and want to broaden my skill set and be able to lead the happy life I had intended.

I hope everyone else is well and I endeavour to update more frequently again.

Month 18 TSW

Last Saturday I reached my bench mark of 18 months, however I have been unable to sit down and blog because work has been pretty manic recently with the build up to Christmas and all of this Black Friday malarky, of which I have had to work. Luckily my store didn't get any aggro and I'm not starting until a little later today so although busy, I'll have missed the huge rush, if there even is one...

So how am I?

Not great really. The infection came back for the third time however the antibiotics aren't doing anything. Last night I must have scratched myself raw because I've woken up oozing all over my neck, cheeks and ears. It's pretty grim :( Especially so since I haven't had any oozing of this sort for a long time. I'll just accept it as one of those things.

No photos today as I simply cannot be bothered to pick up my phone. So you'll just have to take my word that I'm not that great. Obviously this is nothing at all like past flares as I don't get the hives that accompany them any more. Yet it is especially painful today and I can barely move my neck because it is so sore and I'm keeping it moisturiser free. Today will be a fun day at work I'm sure.

Maybe I'll feel more inclined to post photos later but for now -

Over and out!

Edit:

I changed my mind. This blog does act as my form of diary after all.

Still Plodding On

Hey guys, so it's been 2 weeks since my last update and there's just so much to tell you. Firstly, the reason I haven't put up any new photographs of my skin is because there hasn't really been much to show you in the way of change. I'm still dry, still getting red rashes from time to time so the pictures would just be similar to the others and I felt that pointless. I've also had a really hard time taking photos of my face. I just can't do "selfies" any more and if it's not that, then the camera keeps depicting redness that isn't there! Stupid thing. I also still have itch fits from time to time, though these are less and less severe and a very quick shower usually sorts me out.

The second thing I have to say is... *drum roll please*............. we're moving to Leeds! Yes, finally we're moving out of Lincoln and I am so damn proud that we can start to get our lives on track again. We've been stuck here for the last 5 years (6 for Shane) and it's just time to move on. I don't know if this is having an affect on my current red, dry skin because I can't say I'm not stressed. There's so much to do and finances won't be great this month but in a few months time we will be in a much better position. Yay! Also a few of my friends live in or around the area and my mum will be a mere hours journey away <3 I will however miss my Lincoln friends. Now that I'm finally on the mend I can be social but just as this is happening, I'm forging friendships only to leave them behind which sucks!

This past Wednesday I went to see my derm nurse and typically I didn't look my best but oh well! I was a little bit red and blotchy but that's probably the stress of trying to keep my skin nice to show her how well I've been doing. (FYI: I haven't seen her since October 2013!) She said the dermatologist had been given the go ahead to trial a new injection and I was one of the prime candidates. Well ha! I'm moving to Leeds so you can stick your injection (pun intended) I'm not going to be your guinea pig any longer! So that's the end of that. I have an open appointment if I need it, but otherwise I'm basically free.

My legs and back have retreated to their former white glory. The skin is lovely and smooth and doesn't require any moisture at all! Some areas get dry from time to time but I couldn't be happier. My tummy still gets the odd flare but it's nothing to complain about.

You can still see the scarring but when comparing it to how they were they're bloody fantastic! Here's a reminder of how they were.

I can't seem to stop scratching at my arms so they're a bit of a sorry state but I know they'll sort themselves out in their own time.

Similarly I can't seem to leave my neck alone at the moment. Last week it was fine but for some reason this week it's gone back to it's horrible dry self. Ho hum.

The brows are coming back once again but you can see a lot of creases and wrinkles from the dryness of my face.

This side appears to be my better side. Though the brows are still struggling.

And here I am. I'm a little bit red but I'm not too fussed. It doesn't look a bad red like it did initially. For people who didn't know how naturally pale I was they would probably think this was my normal tone... maybe.

Life does get better!

Hope everyone is well :)