2 & A Half Years Steroid Free

As I hit a big mile stone yesterday I figured I'd better make some time to write a blog post on reaching 2 and a half years off topical steroid creams.

Right now I'm really busy with life. I finally have a full time job which I've been doing since the end of September, with two role changes during this time. I've been going to a lot of gigs and having more of a social life. I can't remember my last day of doing absolutely nothing, I always seem to be on the go right now.

I'm still taking Ciclosporin but no doubt I will be asked to come off it soon, but all of my blood tests come back fine each time so my body is in sync with it. I still haven't lost any weight yet but I trust that when my body normalises I will do. My diet is mostly clean but as always, there is room for improvement and I am switching ever more to a vegan diet.

I have also worn make up for long periods on a couple of occasions without any over-damaging effects. This makes me hopeful that my skin is finally toughening up. My eyelids were one of the worst targeted areas for applying steroid creams and it reached a point where liquid eyeliner would burn and eventually even mascara just applied to the eyelashes would cause an awful reaction. I doubt I'll ever be able to wear liquid liner again but I'm happy enough to get away with mascara. Also my eyebrows look fantastic now.

I've also noticed my intolerance to heat has diminished significantly. I've always had poor circulation in my hands and feet, and also have my lips turn blue, but recently I've noticed that this has switched and I'm much more intolerant of the cold. It got to a point where I was unable to wear layers underneath a coat or jacket because I would come out in hives, but now all I do is layer up because I'm freezing cold! I was a lot better over this summer period of tolerating the warm, but the true test will be going over to a hot country to see how I fare then.

Don't get me wrong, I'm still up and down with my skin but it hasn't prevented me from doing stuff recently and I can't remember when I last took a sick day from work because of it. Onwards and upwards!

Recent photo of me from a friends' wedding wearing mascara, eyeliner and eyebrow pencil.

I would dig out more photos but I can't be bothered to trawl through my phone so this will have to do you for now ;)

Hope everyone is doing well, and as ever I apologise for my online absence.

Month 28

Hi everyone, I reached month 28 a week ago so figured I'd best do a catch up post. It seems my posts are becoming more and more scarce as time goes on. That's because I haven't really had any major turning points to speak of. I'm still trundling on, however my social life is coming back and I'm practically on full time hours at work. I've started attending the gym, to address the weight gain, and apart from a few blips I'm quite content presently.

I went to see the dermatologist the other day which I thought was going to lead into the monotonous fight that usually occurs but I was told as long as I was aware of the effects, and was regularly monitored, I could stay on Ciclosporin for the present. That is fine with me, as it seems to be actually working right now. They did mention a drug break though which I will have to eventually do anyway but for now it's all good.

Recently I've been watching more and more documentaries and videos on veganism and am really hoping to make the switch soon. My partner is on side with me as he would like to be healthier overall too. I got a juicer for my birthday, which I'm yet to use but I'm hoping it will yield good results for me. If anyone knows any good recipes, that don't contain celery or cucumber do leave a comment!

Here are some photos from Friday.

Thought I'd take a couple of close-ups to show how wrinkled my skin has become around my nose/cheek area. Thanks steroids (& over-scratching!).

Neck/chest looking good

Also thought I'd include this one of me giving this woofer a good old stroke. Not often my skin behaves with furry ones!

The rest of my body is remarkably clear. Although I now seem to be having some other health issues with my stomach and randomly vomiting so my skin is a bit worse for wear this morning. Oh well.

Hope everyone else is doing good!

A Brief History From Memory

Hey guys,

I've got this written in my FAQ but not many people read it so I thought it was worthwhile posting it here. It's just a brief low-down of my eczema/ skin condition journey. Obviously there is a lot more to it and this is from my ever dwindling memory rather than from doctors notes but it is a pretty accurate account of what has happened to me. It's also not the most coherent but helps to give a better understanding of the complexity of my condition and why I have gone on to develop an addiction to the medications - I just used too much! It is also quite likely I've forgotten to include something. But here we go:

• Childhood - Hydrocortisone. Oral Prednisolone (for asthma). Had chicken pox twice in the space of a year.

• 2001/2 - Betnovate scalp lotion (first started to use hair dye)

• 2003-2005 - all of the above treatments and various moisturisers when needed for small patches that developed on face.

• Nov 2005 - Stressful event resulting in huge allergic reaction affecting face, neck, arms and chest - All the above + Eumovate, Betnovate

• April 2006 - cleared up and returned to small insignificant flares on face and neck. Just used Hydrocortisone and Eumovate

• July 2007 - Heat induced urticaria developed when on holiday in Spain.

• 2006-2009 - Hydrocortisone/ Eumovate

• 2009 - Was given steroid to treat rash on face, within a few months spread all over my body apart from legs. Used Dermovate, Eumovate and told to use as much as I wanted/ like a moisturiser. Had patch testing and IGE testing. Oral steroids. Coal tar, yeast cream (not to be used on face but was told to by derm), Potassium Permanganate. Protopic. Developed red/brown patches of skin on my neck and elbow flexures that were as hard as a scab and really painful. Couldn't move my neck. Was given a cream when I moved to Lincoln but can't remember for the life of me what it was. Was bloody brilliant though.
• Developed severe allergy to the cats at my mum's and was hospitalised a few times when I went to visit, despite having lived with them my whole life!

• Jan 2010 - Immunosuppressant Ciclosporin whilst using steroid creams.

• August 2011 - started to get high blood pressure so had to come off Ciclosporin. Was given several rounds of oral steroids when steroid creams wouldn't help.

• April 2012 - had round of Oral steroids and developed eczema herpeticum after never having a cold sore in my life.

• Tried Ciclosporin again to no effect.

• Visited Allergist/ Immunologist for another perspective but was just ridiculed and humiliated and told "you just have eczema".

• Tried various diets to no avail.
• September 2012 Tried immunosuppressant Mycophenolate Mofetil to no effect.

• October 2012 Tried immunosuppressant Azathioprine to no effect.

• December 2012 Tried immunosuppressant Methotrexate had no effect but started losing hair so came off it in Feb 2013.

• Light therapy which just made my skin look sunburnt, minus my white nose so knew it wasn't a true burn.

• Tried Ciclosporin again to no effect but remained on it for some time. Found out about TSW.

• Started TSW May 22nd 2013. "Eczema" spread everywhere apart from my toes.

• Had major super infection from eczema herpeticum and cellulitis in the eye so was hospitalised for a week. Came off Ciclosporin to try to speed up getting rid of infection.

• Went back on Ciclosporin but became incredibly poorly.

• August 2013 - Found out I had contracted MRSA from the hospital stay so ceased Ciclosporin. Started taking antibiotic Doxycycline for 2 weeks.

• End of August 2013 - Had suspected "TIA"/ "Mini Stroke"

• September 2013 - MRSA came back with vengeance so proceeded to take Doxycycline for 3 months as should have done originally.

• Skin stayed in a mostly good state until April 2014 though still had random bouts of herpeticum but not so extreme.

• April 2014 - Bad case of eczema herpeticum.

• May 2014 - Moved to West Yorkshire and skin became as intolerable as when first come off steroids. (Yearly rebound?)

• Was incredibly poorly until August 2014 when went back on Ciclosporin. Had 6 weeks off work.

• Ciclosporin helped for a month and then had recurring staph infections from October 2014 - May 2015.

• May 2015 - Last staph infection *touch wood*

• August 2015 - Been in a stagnant phase where I will randomly flare but be mostly clear. Eyebrows are back. Still on Ciclosporin but on a higher dosage. Came off birth control pill in May (had been taking for 10 yrs) and have gained a lot of weight. Waiting for hormones to level out.

So all in all we can conclude that I have been given far too much potent topical steroid creams to slather unnecessarily all over myself. Too many round of antivirals and antibiotics for my endless bouts of herpeticum (think we're around the 20x mark now?) and bacterial infections so my gut probably doesn't understand what's right or wrong any more. Far too many rounds of immunosuppressants and just too much in general for my poor old body to handle.I just hope my body will one day forgive me and that all the nutrients I consume will finally have some effect.

Topical Steroid Withdrawal Month 25.5

Hey guys,

I'm now 2 years, 1 month and a couple of weeks into the topical steroid withdrawal process. I'm still flaring but it is primarily on my face and neck, as it used to be before I became consumed by eczema. I have little patches on the backs of my knees and my inner elbow creases, alongside a couple of other insignificant places but that is because it has been so damn hot here in the UK and my sweat has obviously caused skin irritation.

About that though, the heat I mean. I've done much better this year with the heat than in the previous couple of years. This time last year, and in my first year of withdrawal, my skin was an absolute mess. I had to take a hell of a lot of time off work because I couldn't even get dressed because my skin was that awful. This year, I'm sweating and it's still horrible and my face and neck have gone rashy but it isn't anywhere near as bad. Also I am so thankful I now have a car with air con. That really helped when the inside temperature read at 35 degrees(!) and the breeze was also warm when the windows were down. Also worth noting, at home this year I haven't used the fan to help cool down. Shane has, because it's been ridiculously hot but I didn't feel I NEEDED to use it like I previously did. Especially on night times. Hurray!

I have also managed to leave the house sans tights - Yay! If you remember last year, and the year before, my legs were a mess from TSW so had to stay covered up if leaving the house. My whiter than white pins have finally seen daylight publicly. However being able to wear shorts is still a long way off because of stupid weight gain. Read below.

In terms of medication, my Ciclosporin has been upped to 350mg a day - 200mg in the morning and 150mg at night. It hasn't made much of a difference for my face but then I have seen some people say it loses efficacy over time. I've been on it numerous times in the past 5 years so this makes sense. I do have to come off it next month though because I'll have been on this particular course for a year.

I am slightly concerned with it at the moment though. I've never witnessed it in the past, but over the year since I've been taking it I've gradually gained over a stone in weight without changing my diet or lifestyle. Some people have said this could just be my body readjusting because of the steroid withdrawal as initially I lost weight. To put this into perspective prior to TSW I was around 9 stone 5lbs this dropped to 8 stone 11lbs, and then when my hair started to grow back (I lost a lot of hair from taking Methotrexate back in Jan 2013) I went back up to around 9 stone 4lbs. I then started my vegan diet in June 2014 and hovered around the 8 stone 13lbs to 9 stone 1lbs. Then I went on Ciclosporin in the August 2014. Since then I've slowly gone up to 10 stone and having recently upped the dose again (May 2015) I'm hovering around the 10 and a half stone mark. I'm absolutely gutted. I feel and look disgusting.

I'm still finding difficulty with exercising and now even more so because of this damned heat. Perhaps I need to go back to the strict plant based vegan diet I was undertaking this time last year which I keep harping on about. I just feel crap and rubbish. A lot of people claim they can't even see my weight gain but that's because it has all gone to my stomach area so I can hide it to an extent. I've been experiencing a lot of bloating lately too. I'm supposed to be having a blood test this week so perhaps it is worth enquiring about a urine test just in case.

I've already asked in the Facebook group, but has anyone else experienced weight gain from Ciclosporin?

Also I did ask about trialing Dupilumab but the derms have been rubbish in pushing it, and I did try emailing myself but haven't had a reply. Not sure what more I can do on that front.

How is everyone else doing?

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.

13.5 Month Photos

Please ignore the toilet and general bathroom stuff in the background. I can't be bothered to retake the photos.

Face with a little bit of Purepotions on. Yay for eyebrows though.

My lovely Deirdre Barlow neck :(

Chest

Right hand side really seems to be going at it in terms of flaring.

Right leg

Left leg

Left thigh

Poor wrinkly tummy

Mass shedding on left arm (right is the same but too hard to photograph!)

Hard to see but wrists have a bit of a sleeve thing going on

Right arm - you can just about make out the open sores

Armpit. Infection has disappeared thankfully but it's dry and slightly red.

Back of knees are appalling and I'm finding it hard to walk.

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 :)

Hopes for 2014

Wow. What a year 2013 was. I thought 2012 was my worst year in history for my health however 2013 managed to trump it by far. I reached an all new low of constant skin infections, finding out about the effects of topical steroid addiction and how the withdrawal process is one of the most shockingly horrendous and disgusting procedures that one can undertake, and that it's all thanks to doctors, who are supposed to make us better yet in fact make us worse.

So much has been sacrificed because of my health; friendships, happiness, the happiness of others, life in general etc. This year I think the only possible route is up, up and away, to leave the past behind me and to open new doors that aren't so exclusively interlinked with my health.

It has now been 5 years since I have truly suffered with "eczema" and I feel as though I've wasted so much time succumbed to my illness that I've lost sight of how life should be. It shouldn't all be doom and gloom as it has been. Sure, I've still managed to achieve a lot in that time and I am thankful that it has actually offered me some great opportunities that it otherwise wouldn't have but it has also prevented me from doing so much too. I think this is the year that I give my health the finger and try to find true happiness, to finally become confident in myself and my abilities and to move forwards.

I have so many regrets of opportunities missed that I can only blame on my health and my own selfish nature, and in turn have lost sight of who I really am and which direction I would like my life to go in. I feel as though I have failed myself in ways and that I should have experienced so much more in life by now.

This year I'm going to stop blaming myself for my shortcomings as I think that is the only way that I can ever truly move forward. I intend to become a much more positive person and help others around me whilst striving to be the best version of me that I can be. I want to grab life by the horns and just live it. I want to get out there and do stuff, see new places and meet new people. I want to take risks and be carefree (or as carefree as I dare to be) and to just find a sense of true happiness.

I want this year to be the best yet, or at the very least, better than last year.

Here's to a new year of challenges and happiness.

I wish you all the very best xxx

Shane finished his 1000km challenge on New Years Eve, running his 53rd race and reaching a total of 1093.48km. It has been tough year for both of us with him running every weekend when I felt I needed him most but it just shows how determined he is to make a change and to raise money for those suffering dearly from eczema. Fortunately the sun bleached out my face but I think you can still tell that I'm much better than I was this time last year. Here's to an even bigger improvement for the end of this year!

December Skin: Day 205 TSW

How is everyone?

I'm not gonna lie, life is fairly decent right now. I'm working 5 days a week with ever increasing hours as the Christmas period gets into full swing. I feel busy and quite satisfied that I'm able to do more for myself and others. I am however still getting random flaring and lots of dryness. I took some quick photos this morning but they're not very good at pointing out the red bumps on my face so you'll just have to take my word for it that I have an itchy, red, bumpy face. Oh and there's a coldsore on my lip. Bloody thing!! That just randomly decided to pop up during my shift at work on Monday and is still lingering despite me taking Aciclovir daily. At least it is only isolated to my lip which is a very good thing, as we're all more than aware of my history of eczema herpeticum!

Face.

Leg.

Excuse the mop and bucket in this photograph. I just wanted to show you quickly that my legs are still going, and I'm still picking. Stupid girl! Both legs are the same.

Arm.

Now this is the biggest surprise. The photo is a bad depiction but my arms look just like my legs right now. They're absolutely covered in scabs that just won't go away!! I've tried not moisturising them but find I still scratch away at the dry skin, and moisturising them but I'm still scratching away... I just can't win. They and my face are the biggest sources of annoyance right now, especially when I catch customers staring at them as though I have the plague. I need me a new job! 

Overall I'm not bothered what people think of the way I look. I've covered this point a lot throughout the time of my blog but I reached a plateau earlier this year, around the time that this blog came into fruition and I just couldn't care less about how my condition may appear to others. I learnt that this is me, I can't help the way I look, I have an illness and if you don't like my inability to wear make-up and the lack of embarrassment I have of myself then please go away. You're not helping, you're just being judgmental of something you know nothing about.

When you do find yourself bound to illness you learn to cherish the smaller things in life and that all of the superficial stuff is exactly that, it just isn't worth dwelling on. Rant over. Haha!

Day 192 : Topical Steroid Withdrawal

Thought I should give you all an update as to how I'm doing seeing as my last entry was about my 8th bout of eczema herpeticum.

Well I went to see my GP as I stated I would on the Tuesday morning and was given 800mg tablets of Aciclovir, the usual treatment to rid the skin of the herpetic viral infection. Needless to say it worked and I was pretty much all cleared up by Wednesday evening. I'm glad it was short lived this time.

Last weekend we stayed at Shane's parent's house for a little break away as Shane had finally taken a week away from work. Believe me when I say he's needed it! He hasn't had a full week off work since he started the job 2 years ago and all the stress of this year with my health and his 1000km Challenge has pretty much taken its toll so this week was hugely needed for him.

It wasn't much of a break though as it was this past weekend that he hit his 1000km target at a half marathon in Norwich! But he isn't stopping there of course... oh no. Being a stubborn sod he's going to run another 5 races this year, including the marathon in Liverpool on New Year's Eve just so that he can reach his target of 52 races. Crazy! I will finally get to spend my weekends with him next year. I hope. If you'd like to sponsor him for his hard efforts and because he has gone above and beyond all expectations feel free to sponsor him http://justgiving.com/shanes1000km or check out his links in the tab at the top of my blog entitled "1000km Challenge". Thanks guys!

The first night of staying at his parent's house I woke up with a red, blotchy face. Eep! I honestly haven't suffered from that since around August time before I stopped the immunosuppressants and was diagnosed with MRSA so to suddenly wake up with it last weekend was pretty shocking. It got worse each morning and I think I can only attribute it to a washing powder allergy? It was only confined to my face, the rest of my body was fine, but given I wear full PJ bottoms, socks and a baggy t-shirt makes me think that is must be a contact allergen.

Frustratingly the red face hasn't disappeared just yet. I'm not waking up with it any more now that I'm back in my own house but by the evening it will be back again, due to being itchy and rubbing it, so I don't know if I may have awakened something in some way. Brilliant.

Anyway as always I hope everyone is well!

Topical Steroid Withdrawal 6 Month Anniversary

I drafted the following post last week however I've woken up today with my eye closed shut with pus and the telltale signs of eczema herpeticum. I'm long over due I guess...


So next Friday will mark my 6 month anniversary of being free from using topical steroids. It will also be around 3 months of quitting immunosuppressants too.

A lot of changes have been happening over this past week. Changes I am so happy about and feel incredibly grateful and optimistic that next year won't be so tough. Next year surely has to be a good year!

I've been taking small steps to be more social, whether this be grabbing a hot drink with fellow colleagues after work, or getting out of the house that little bit more for a browse in the shops, or even picking Shane up from work, I'm doing it and it feels great! I've been making more solid plans such as arranging to attend my work's Christmas party and even paying in advance. For how I've been over the course of this year, I wouldn't have even dreamed of paying cash up front for an event just in case I needed to bail out but I do feel very optimistic that I'll be able to go regardless.

I've now been attending my shifts at work 4 times a week since my last bout of illness in the first week of September. I think this is an amazing achievement as I was off so often that my attendance percentage was sky high and I'd come to the red sheet of warnings far too often than I care to. Obviously my managers understand my condition so knew it was not my fault for needing to take so many sick days but it still stings to sign that final warning sheet, where normally 3 strikes and you're out is the usual procedure. My hours have been creeping up and I even asked if I could take on another day whilst it's the Christmas period. Luckily because it is only a part time job my longest shift only requires me to be there for 6.5hrs. The rest of my days are usually only 4-5hrs, if that but it's still amazing progress!

On Wednesday I probably reached my biggest achievement of all. I was sitting in my craft room actually crafting! When we moved to this house one of the requirements was for me to have a room dedicated to all of my craft things (saying I have a LOT is an understatement!) and it's only taken me a year to be able to use it for its designated purpose. To also further this, the fabric I was using was shedding an awful lot of fibre dust and did I react? No! I'm literally over the moon <3

Also I've been able to start doing a bit of exercise. I am so unfit it is ridiculous! For years now I have been prisoner to the awful heat induced urticaria which is brought on by exertion, meaning exercise was nigh on impossible. Some how I've been able to do cardio, albeit not for long because I get so out of breath(!), but my hives appear to have been kept at bay. Sweating is still a little bit of an issue but I'm not scratching myself frantically as I would have been previously. It definitely feels a lot more tolerable.

I'm so, so happy that my life is slowly but surely getting back on track. Next year I'd like to achieve quite a lot before I hit the big 25; such as going abroad to maybe Norway or somewhere lovely I've never been, finally obtaining a full time job, moving away from this city, starting up a craft based business and finally being able to properly say thank you to Shane for supporting me and being there in my toughest times. Without him I really don't know how I'd of survived.

Life is getting easier.

26th June 2013 TSW

My skin isn't improving at all. It's weeping constantly throughout the night making sleep somewhat of a difficulty to achieve and my antihistamines are not working one little bit.

I'm currently dithering as of whether to start up the Ciclosporin again as in the back of my mind I have a feeling it may be what contributed to my recent hospitalisation. On the other hand, I don't know how much longer I can deal with the itchiness. It's that kind of itchiness that I would describe as "searing" just like searing pain that is endured when you have small scratches and when showering is magnified as you experience the pain in each and every single scratch. The searing itch to me feels on a similar scale to this as you feel each and every single scratch tingle with an acute, unrelenting itchiness. It's terrible.

As for my skin itself, Shane pointed out to me last night that I'm not bright red all over my face any more, I'm back to being blotchy which I haven't experienced for a few months. I guess it's just a form of healing. 

For me, it's really hard to gauge what is going on. I stopped using topical steroids in May even though I had been going through a tough time with recalcitrant full body "eczema". As soon as I started the Ciclosporin, by the end of the week my skin was becoming beautiful. I was really happy that the dryness was less apparent and I'd lost the redness. However the very next day obviously I ended up with my nasty infection of eczema herpeticum and a secondary infection of cellulitis, and since that time had taken antibiotics to treat the cellulitis. Skip two weeks later with the antibiotics finished and I'm back to being a mess.

Is it the lack of antibiotics? Is it the lack of Ciclosporin? Or is it just TSW?

It's just so hard for me to know what avenue to take with all this as obviously my body is at the end of it's tether. If I'm not reacting through my skin then I'm getting reoccurring infections. I say this often but I'm just becoming tired of the whole routine.

Anyway I leave you with some images. They're not brilliant in showing all the detail but they'll do. 

 A mostly white face with red blotchy patches

 A close-up. There's a lot of raw openness which you can see in the red as well as yellow and orange areas where the skin has thinned.

 Red open scratches on my neck that lead down to my chest, mostly due to the skin cracking open when weeping.

Tummy has started up again. Grr.

June 24th 2013

Back to work this evening for me. Frustratingly after my skin has been doing so incredibly well it oozed and wept on my face, neck and chest last night, which has resulted in scratches, a red rash and little sleep.

Story of my life.

I hope it doesn't proceed to get worse else I'll have to seriously consider going back on the Ciclosporin, though in all fairness I am surprised that I have been able to go this long without anything but moisturisers. Very unlike me! 

I am a bit worried that I might get cellulitis again though. My course of antibiotics finished on Saturday and on the evening I had some edema (swelling due to fluid) under the eye that had been previously affected. I was worried that it was all going to kick off again but it seemed to be fine the next day. I'll be keeping a watch over it though as cellulitis can be a real problem, taking months to properly go away. Joyous.

Gah bumhug.

For once the camera has been kind to me as you can't really see the gouges/scratches but they are there. I'm just a very pink lady. My shoulders and tiny bit of hairline look really funny next to the redness.

Edit*

Just tried to take some more close up pictures but it's really hard to capture the uneven skin tone where it looks kind of orangey in some places, yellow in others etc. but I did get this one, which shows how nasty and dehydrated my skin is despite my best efforts...

Friday May 31st

*Be warned that there are some potentially NSFW images in this post.*

So on Friday I went to hospital and ended up being there for 3 bloody hours!!! My appointment was at 10:40 but I wasn't seen until an hour and a half later. I then had to get my blood pressure done, go for bloods, a new prescription of Ciclosporin and produce a urine sample which my bladder didn't want to cooperate with. Because I was there for so long I was unable to have a shower before work, leaving me in a right old state. So as you can see by the images below, it was not pretty.

I suppose I should tell you what happened when I saw my derm. Well he told me he read a bit of the article I gave him on Red Skin Syndrome but didn't find it particularly credible - thanks bud! Luckily my derm nurse seems to find it intriguing enough to look into though, so I shall share these articles and blogs etc. with her. 

I've decided to give Ciclosporin a 3rd chance whilst I withdraw because there is no way I will be able to continue to go to work whilst flaring seeing as I'm finding it difficult enough at present with the state I'm in. I'm completely zapped of energy which isn't helped by the fact that I've had to go to work for 6 days in a row and won't get a break on my days off as they are filled with things that need to be done. Ugh. I need to relax. It takes so much effort to preen myself for a short shift at work and by the time I'm home I'm scratching myself to pieces. Really not nice.

Without further ado - here are the promised pictures. Don't be too freaked out by my near-nakedness.

(L-R) Body; Chest, tummy, arms; Tummy/ above underwear line

(L-R) Tummy; Back of knee; Breast; Arm

A truly grimacing sight. 

My belly is so ridiculously awful. It actually looks like an old woman's tummy due to the loss of elasticity. My poor skin.

I'm also pretty wound up today because some complete moron randomly reversed into my car whilst we were waiting at traffic lights. Luckily there's only minor damage but I'm still hacked off. I didn't have a straight thinking head, and even less so because I was dying for a shower so I didn't get his contact details for if anything does occur later on. I swear people just like to vandalise my car for the hell of it. Must have a retard magnet on it somewhere...

Topical Steroid Withdrawal

So I haven't applied any steroid creams since Saturday 18th when I was in a bad way with the hot water not coming on when I was in my state of desperation. Eventually after I'd had my bath I liberally applied Hydrocortisone ointment as if my life depended on it. It hasn't  been an intentional thing as such to cease usage, but there is the niggling in the back of my mind that they are likely to be the source of all evil. 

However, since this time my skin hasn't really improved at all. Like I mentioned in my post prior to the Bake Sale, my skin has been going through all sorts, never following the usual pattern of red, weep then flake. Instead it has been doing all these things either at the same time or in whatever random order it feels like doing it. As you can imagine, this has resulted in me whinging and feeling like crap and the need to nap and generally relax. 

I also think I have a viral infection on my torso. Whether it is from the antibiotics I took, I have no idea but it's getting on my nerves as every part of me seems to have something wrong with the skin. My arms and back are dry and flaking, with deep gouges and scratches from attacking myself in my sleep; my face and ears are a mixture of weeping, red, dry and flaking skin, and in fact felt as though I had been stabbed in the face hundreds of times when I woke up yesterday morning... The backs of my knees are also awful but I'm putting it down to being overheated, and my thighs are also pretty bad right now. 

excuse my flabby tummy. I appear to have put on a bit of podge ;)

Backs of legs

Front of thighs

I'm fed up of the sight of my skin flakes every where and the constant hoovering. It just brings it all back to the old days. I feel bad for Shane that I'm having to depend so heavily on him just so that I can function and get through the day. I can see how much stress I add to his life and I just wish he didn't have to carry out this additional burden, given how much else he has to attain to. 

I'm seeing my derm on Friday so hopefully he decided to do some background reading... I am thinking about possibly giving Ciclosporin another go whilst I go steroid-free, though I am wary of it working for me as it didn't the second time round. We'll see.

Hope everyone else is doing good?x

An Eczema Update

My blog is in dire need of an overhaul. I don't much like how it looks but hopefully we can rectify this soon... I've also added the Google Followers widget which I use over on my other blog yet for some reason it completely slipped my mind to add it on here, so you can now follow me that way if you wish.

So yesterday I went to see my dermatologist, bringing with me an article from the ITSAN website. He seemed to be fairly open-minded about it though obviously in the short time I had to see him I couldn't exactly divulge the entire longs and shorts of what is to be expected through withdrawal and so on, and so I can only hope he uses the resources I gave him to do a bit of background research. I also gave him access to this blog, so if you're reading - hello!

In the mean time I've been given antibiotics to rid the infection/ inflammation and another stepped up course of Aciclovir as despite taking the medication, most irritatingly a cold sore has decided to crop up on my lip. Think I've caught it just in the nick of time though. He did suggest I cease all steroid usage now and I have a follow-up appointment next week but as I tried to explain to him in the first instance it will be hard to keep up with my job. I will seriously cut down on my use though and only stick to milder ones such as Hydrocortisone, if I do feel I need to use them. We'll see anyway.

I've not been sleeping well for the last few nights because I've been unable to sleep on my side due to both my ears overheating, resulting in weeping and just general discomfort. Not nice. My skin is also being super crazy generally. As most people find it goes through it's red, angry, rashy stage; does it's oozing etc. and then finally sheds. Right now my skin is doing all of that at once. I hate the oozing so much. It actually smells as though the skin is rotting. Grim.

Hope everyone is doing well, and I wish all those who are going through withdrawal right now the best of luck as I hope to be doing what you're doing some time soon in the hope of regaining a better quality of life.