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Tuesday, 9 December 2014

A Catch Up

I'm pleased to say the former infection has been controlled by a different antibiotic. However, I am now undergoing a bout of sodding herpeticum. It has been 4 months since my last one so it was expected, especially with how much stress I've been going through recently. I'm just annoyed because yesterday was my first day back at work & now this has cropped up. Thanks body!


Saturday, 29 November 2014

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.








Monday, 17 November 2014

Aquaint Sanitiser

I have recently had the pleasure of trialing an eco-friendly water-based sanitising product from a brand called Aquaint. It is a 100% natural sanitiser stated to be used for the hands, skin, mouth and more. It contains no harmful chemicals, fragrances or alcohol and kills 99.9% of bacteria, yet its ingredients are so safe you can even ingest it. Water is used as the base for the product to be highly effective as a cleanser and its only other ingredient, Hypochlorous Acid (a harmless natural acid produced by the human body to kill bacteria), provides its antibacterial properties.

The product claims not to cause dermatitis or sting on application due to the harmless ingredients, which we can all agree is a god-send! It is a product created to be allergy friendly so that all skin conditions may benefit from and use it. Aquaint can also be used for all ages, including new born babies to help fight against nasty germs. As well as this you can use it to prepare food, clean the likes of dummies, bottles and toothbrushes, toilet seats... and so on... you can even use it as a mouth wash and to deodorise which would have been great to try out if I was still able to go camping at festivals - may be one to try for that purpose!

500ml spray bottle (RRP £4.99)

50ml hand sanitiser (RRP £2.49)


I was sent a small handy travel sized 50ml version alongside the full 500ml version that comes in a spray bottle and can be used at home. As a shop assistant one of my main concerns is picking up different germs and bacteria from customers and the money they hand over. Working behind the checkouts means I am unable to run off and wash my hands as often as I'd like so hand sanitiser is essential to me. I found the product to be good for this purpose as it sinks into the hands quickly and doesn't leave a horrible sticky residue like some others do.

When we moved house recently I found the 500ml spray bottle to be really good at cleaning the surfaces, appliances and such and meant I could actually join in with the cleaning as it wouldn't aggravate my skin. I also used it to clean surfaces with my recent skin infection, which I'd like to think contributed to me getting better, but gave me peace of mind if nothing else.

Aquaint products have also been given the Allergy UK seal of approval as well as numerous Awards and Accreditations so they must be good!

If you want some for yourself their website is: http://www.aquaint-uk.com/shop and if you're in the UK the likes of Boots and Amazon stock it.


Saturday, 8 November 2014

Infected Eczema

Hey guys,

Thought I owed you all an update. So around the 22nd October I was given antibiotics for a bacterial infection that had started to crop up around my nose and mouth. Within a couple of days this cleared up and I finished my course of antibiotics.

Fast forward to the 27th; moving day. This was me after hours of running around, loading and unloading, carrying heavy items up to our top floor apartment. No hives. I was on top of the world.

27/10/14

However as we know this is me and my life is never simple.

Fast forward to the following Monday (3rd Nov) I could see some redness occurring on my face and such but this was the day I went to see my derm nurse and for some reason my skin always goes a bit backwards when I see medical professionals. Funny coincidence that, huh? But we shook it off as just that, Afterall the rest of my body was perfect.

The following day I woke in the early hours to a sickness bug. This carried on for the entire day and I was so weak I couldn't even drink fluids.

The day after (Wed 5th Nov) my skin was becoming a right old mess but I didn't want to ring in sick at work. So braved it and went in even though I could see the beginnings of infection returning.

5/11/14

5/11/14

After my shift I went straight to the hospital to see my derm nurse as she had previously said on Monday that she would rather me be seen there than by my GP. So off I went and was swabbed and given a longer course of antibiotics.

The next day (Thursday) I woke up feeling terrible and my skin had worsened and was visibly spreading. I decided to go to work anyway as I figured the antibiotics would soon start to kick in.

Friday I woke up and was far, far worse. My eyes were now completely affected and crusted shut together. It was now on my chest, back, backside, legs and arms. I was a mess and it hurt so bad I couldn't move.

7/11/14

This brings us to today (Saturday). It hasn't improved at all and the antibiotics don't seem to be working as quickly as usual. I am however going to wait it out until Monday for improvement but if not you can bet I'll be straight back to the doctors.

8/11/14


For some reason the redness and swelling isn't being depicted so clearly by my phone. I think it's because smart phones these days are made to give more "flattering photos" for the vain upon us, rather than depicting what is really there. But alas you can see I am suffering.

I haven't felt this horrendous since my last bout of MRSA. I also have a wisdom tooth coming through which of course isn't helping matters, especially given that I can barely open my mouth as it is due to the extreme dryness. Ho hum. Suck it up.

Fingers crossed the weeping will soon stop as that is definitely the worst thing ever with infection.




Wednesday, 22 October 2014

Giveaway Winner / 17 Months TSW

I didn't even realise it until just now looking at the date but today marks my 17th month without using topical steroids. Hurrah!

I am currently on yet another course of antibiotics for yet ANOTHER bacterial skin infection I've picked up but hey hum. I'm going to try to load myself with probiotics this time as well.

This was yesterday morning but it did proceed to worsen as the day went on. Mmm yellow crusts!


Not the most flattering picture but this is from just now. Scabby face.


So in other news - the winner of the giveaway was Tiffany! Well done you!

For those who were keen on getting a pair of the pyjamas for yourself you are in luck because Gail has been sweet enough to offer readers of my blog a special discount of 20% off! All you need to do is enter "JENNY" in the discount voucher box and you will get 20% off the price of each pair of pyjamas that you buy. This is valid until 20th November! Find them here: Find the eczema, allergy and topical steroid withdrawal friendly pyjamas here.

I can't stress how brilliant the quality of these pyjamas are nor, how much they have helped my skin through topical steroid withdrawal because of their built in hand folds and feet to stop you from scratching.





Friday, 10 October 2014

Becoming Resistant To Antiviral Treatment

So I guess it is of no surprise when I inform you that I am faced with yet another bout of eczema herpeticum? I've actually lost count now of how many times I've contracted it (Maybe getting close to 15 times in 2.5yrs?) but this is definitely the second time within just over a month.

I asked at my most recent consultation what the likelihood was of me becoming immune to antivirals and was told that it couldn't happen because they're not the same as antibiotics. I've also asked in the past and have always been met with a resounding "no".

Well I did the stupid thing of trawling the internet and came was unfortunate to come across this article about resistance to antiviral treatment.

I am now terrified :(

Taken from the website


I now just feel full of regret and also anger for being allowed to have even reached this state. I have a derm appointment this morning but I have no idea how it will go seeing as the herpeticum I have isn't fully fledged because I was already taking the maintenance dose of 400mg x2 daily, which may lead them to assume from first glance that it isn't herpeticum. However, the tingling and areas of pain suggest otherwise.

Ideally it'd be nice to come off the Ciclosporin again now that my skin is back to a reasonably good state, but it depends if my skin worsens or not in the mean time. My neck is already starting to react but I think that's because I've been scratching it due to stress. Must stop scratching out of habit!

It just annoys me so much how my skin can change in a matter of days. It was only this Sunday past that I was celebrating the fact that I could wear an all black outfit without having it covered in skin flakes. Now I'm undergoing another bout of herpeticum. Ugh.

I also forgot to mention that since I upped my medication I've been experiencing hair loss and did lose my appetite but it does appear to have returned. The hair loss is baffling me because Ciclosporin induces new hair growth however I did notice one of the rare side effects of Aciclovir can be hair loss so perhaps the cocktail of drugs is too toxic for me. We'll see what is said at today's appointment anyway.

Allll black 

Showing off the white arms for good measure.



Wednesday, 8 October 2014

Everything For Eczema Bamboo Pyjama Giveaway

Some time last year the lovely Gail from Everything for Eczema got in touch with me to ask what I'd like to see in adult pyjamas, specifically designed for eczema and allergies with a speciality in topical steroid withdrawal. I suggested having leggings with feet and also some form of gloves/mittens attached to the sleeves so that if would be difficult and nigh on impossible to scratch yourself with them on.

She got back to me a few months later with a design that seems to be exactly what we need! They are made from bamboo, organic cotton and 4% lycra to make them easier to put on over sore skin. The bamboo also  has excellent properties. It makes the fabric super soft, breathable so it helps to keep the body temperature regulated, is more absorbent than cotton for excessive sweating, and also contains antibacterial properties. The pyjamas have been created in Europe by an organic manufacturer so all of the fabric and dyes used can be traced if necessary. After all, we are all going through bouts of intense sensitivity with our skin so this factor is very important! The labels are also on the outside of the garments so none of that needing to cut them out because they irritate the skin.

Sorry for the rubbish quality photos!

Yours truly modelling the pyjamas

The pyjama top has fold-over style mittens on the sleeves which I think are an absolutely genius idea because there is no way in your sleep-like state you can get these things off to attack yourself, unlike when wearing gloves or mittens where they easily come off and you find you've torn yourself to ribbons. They're not impossible to get off but you really have to think about what you're doing when you do flip them so it's fair to say you're pretty safe when you're asleep.

Sleeve turned inside out to act as mitten

Sleeve the hands-free way to show you how they can be transformed into the mitten


The bottoms have enclosed feet so there is no way at getting in there and tearing your legs and feet to bits so they are well protected. The waist has a draw string fastening as it was thought that elastic could be irritating to those with allergies. It also means you can wear them on your hips or waist and as tightly or as loosely as you need when your skin is sore.

The built in sock

Drawstring waist

These pyjamas have really helped to keep my skin in check when I have gone through my intense stints of itchiness and open sores.

They are a lovely shade of blue in colour and come in sizes ranging from an XS to XL which can be worn by all adults and even older children. There is a size chart that can be referred to on the website to ensure that you get the correct size. They are £59.95 for a pair, however it is a great investment because due the bamboo/cotton combo they are truly made to last and withstand the steroid withdrawal cycles.

Gail has been lovely enough to give away a pair of these amazing pyjamas to one of my lucky readers! A new pair that is, not the one's I'm wearing above!

For your chance to win please just fill in the widget below: it barely takes any time at all although it is recommended that you sign up to blogger so that you can leave a blog post comment and follow my blog!


a Rafflecopter giveaway


Also as an aside and if you are not a winner - I am not endorsed for advertising these beauties but I truly do feel they make a difference to our quality of life when going through TSW so go grab yourself a pair here and enjoy actually feeling comfortable! http://www.everythingforeczema.com/adult-eczema-pyjamas.html. It's also lovely knowing a company actually cares about us and sees TSW as being a valid condition!



Wednesday, 1 October 2014

Living With Eczema Book

As you are aware I endeavour to spread awareness about eczema and how horrible of a condition it can be. I was contacted in the summer of last year by Mei of http://eczemablues.com/ to share a picture of my eczema for a book she was co-authoring with her daughter's doctor, Professor Hugo van Bever. Of course I said yes as I love to do anything that may help others.

The book is finally out and is incredibly interesting and detailed as it is split into 3 parts; Learning about Eczema, Living with Eczema, and Eczema and Beyond. The first chapter discusses the basics of eczema and gives an in depth insight into eczema as a condition and why eczema occurs. This then leads on to the second part which details diagnosis, triggers, prevention, treatment and adult eczema. Finally, the third part looks at future research and the things that don't work. Between each chapter we are also faced with questions asked by Mei to Professor Hugo who answers all the things we've ever wanted to know about eczema.

It is a factual book that is written professionally yet can be understood by all and the pictures used are really helpful in giving a better idea of how eczema presents itself. However the only problem is I think there was some confusion when selecting images as the photograph that was used of me was inserted under the eczema herpeticum heading. I don't actually have herpeticum in that picture so it is a false interpretation of what it looks like. I actually had MRSA there.

Image used to depict herpeticum is actually MRSA

Eczema herpeticum with secondary cellulitis infection

For those wondering, yes it does cover the topic of steroids and also steroid phobia, but it is fair in saying that people should not be frightened of them so long as they are not misused. I definitely did, and was advised to misuse them, hence my topical steroid addiction. It also includes a table featuring the potencies of common corticosteroids and another to advise on their application. It does detail numerous other treatments also.

Aside from the photograph issue, I think the book is excellently laid out and written and will be an asset to those who live with eczema and also for those who don't but want a better understanding of the condition.

Thank you Mei for allowing me to help your project.

Book cover

For more information please visit: http://eczemaqna.com/

Wednesday, 24 September 2014

Man's Steroid Reaction

I found this posted on the ITSAN Facebook page today. It is so compelling and I'm so happy to see steroid addiction might now get more recognition, especially because it showed a Google image search of other bloggers going through this horrific ordeal, that in turn may provoke others to do the same to read up on the condition.



Not everyone seems to be able to view the embedded version so here is a link to the website http://www.cbc.ca/news/canada/british-columbia/steroid-reaction-causes-b-c-dentist-to-question-prescription-1.2775404

It is however frustrating to see that the dermatologist is obviously aware of steroid addiction and just states that if he had weaned himself off he wouldn't have suffered the reaction. I suppose in one sense it's good to see at least one of them is aware of it and not just telling him it's just worsening eczema as every other derm seems to do.

Also it will be interesting to see if there ends up being some kind of epidemic with the steroids, seeing as there is currently some trouble with their manufacture. Will we be seeing a rise in red skinners?

Ever onwards and upwards!

Sunday, 21 September 2014

16 Months TSW

OK, I'm going to stop apologising for my absence and lack of communication as it must be getting old to you all now and I'm sure you can understand why I have been updating less and less.

Tomorrow will mark 16 months post topical steroid treatment. Hurray!

Since my last post where I had been bad, I had an appointment last week with my dermatology nurse who has since upped my dosage of Ciclosporin, and to counteract that, has also upped my Aciclovir in an attempt to prevent the herpeticum from reoccurring. I do have a cold at the moment though so we'll see how I fare in the next couple of weeks. I have my fingers firmly crossed because I also have an appointment with the dermatologist in 3 weeks and I can't be bothered to go through the steroid spiel again. I don't know if I mentioned before on my blog but I was referred by the hospital for liaison psychiatry and I can only think that is because they think I'm steroid phobic, Oh dear, dear, dear.

I've seen a lot of people getting better recently and that gives me some hope to hold on to. I already know I'm better from where I was when I started the journey last year... even if my poor health has brought with it a series of unfortunate illnesses that you couldn't even make up, including my mini stroke/ TIA that occurred last August. Crazy times.

I need to regain control of my strict vegan diet as I have strayed away as September is my birthday month and there have been too many occasions that have called for celebration. It is however becoming difficult now that the seasons have changed as fruit is becoming worse in quality which is putting me off slightly. No one likes mouldy fruit. Yuck! I don't think healthy eating has helped my skin yet but then again I haven't done it for long enough to yield good results. Plus boosting my immunity, especially on immunosuppressants is definitely necessary.

Also pics:

Me today

Yay for eyebrows. I need to get them sorted now because they actually look disgustingly wide.
This was the only photo I could capture where my face didn't look MEGA wrinkly. I don't think it's that bad in person but my camera seems to make me look about 80.



See! D;

Does anyone else suffer from this or has your skin managed to regain some of its former elasticity?


Anyways enough of my ramblings and I hope everyone is faring well.





Monday, 8 September 2014

15.5 Months

Hey guys,

Sorry I've been distant and didn't update after the weekend as I said I would. The calm never seems to last long for me and after a weekend of being a normal person, I found myself with eczema herpeticum again, and that's despite taking a maintenance dose of 400mg x2 daily. Since then I haven't had the lovely skin that I did and it has just been a constant battle to try to regain it.  I am however still managing to live a fairly normal life and haven't had any recovery days recently which I can only see as a positive thing.

Still chugging along and I believe I am now 15.5 months into withdrawal. Looks like I'm in it for the long haul. Was going to include some pictures but my phone doesn't seem to want to show the full extent of the damage. Never mind.

Wednesday, 6 August 2014

Month 14.5 TSW

I've been very reluctant to post on here recently. I'm fed up of whining really but figured I should do an update on what's been happening.

Well I'm now 14.5 months into my withdrawal and I'm still a complete mess. It turns out I did have a staph infection so was given antibiotics but now that they've finished I'm still struggling. I haven't been able to get dressed in the past 3 weeks now bar a couple of times where I've managed to force myself into stuff. It's insane. I've also been off work on the sick for all this time too. I don't return until next Tuesday but I'm scared that I still might not be ready!

I have a lot of important family stuff coming up over these next two weekends and my skin couldn't have picked a worse time to degenerate. Luckily I see the dermatologist tomorrow with the view of putting me on Ciclosporin for a bit, mainly as a compromise because I declined the steroids. I'm terrified of contracting eczema herpeticum whilst taking it, especially with these said events I need to attend but I guess we'll cross that bridge when we come to it. I'm hopeful the Ciclosporin will at least clear my skin so I have a cleaner slate to deal with and will hopefully help my skin to heal a bit better.

I've also drastically changed my diet. For the past 3 weeks I've been following a high carb, low fat raw vegan diet. I've seen a lot of helpful information regarding this diet where people have managed to eradicate chronic illness, from eczema to the likes of cancer. I haven't noticed much of a difference yet, other than weight loss... but I'm surprised at how well I'm managing to keep it up. I don't really have any cravings for bad foods so I guess that's cool. I suppose my body is so toxic inside that it will take time to see any visual differences regarding my skin but I hope that this change will at least help to boost my poor immune system.

Thanks for all your messages, be it comments or emails and I apologise for not responding to everything, though I do read everything. I'm just lacking motivation and feel as though I've slowed life right down just to get by, but I know everything will need to resume to normal speed soon, as I just don't have time to be ill.

Ok, I've rambled on enough. I hope everyone is well and I'm sorry there are no photos. My camera battery has died and I can't find the cable to recharge it. Oh well.

Monday, 14 July 2014

Not Getting Any Better

So things seem to be getting worse and worse. This past weekend was good though. I decided that even though I was probably in no fit state, I still wanted to go on a coach trip with my Mum to Chester/ Liverpool which meant getting up at 4:30am to drive up north to hers, to catch the coach for 9am, to go all the way back past Leeds again to get to Chester. Joy lol. But we did have a jolly good time despite me not being in my best shape and feeling sorry for myself a bit. It definitely beats staying at home moping around alone anyway!

So yes, Mum came back home with me last night as although I wasn't great I was still better than I had anticipated so we had decided that we would have a shopping trip in Leeds. I also had a follow up dermatology appointment to attend this morning from my time in hospital the other week. However by the time we got home, there had been some road closures in the city centre and I got SO lost (thanks sat nav!) which resulted in me being completely stressed out and a little worse for wear and didn't think it had actually been a great idea to invite my poor mum back with me when I felt so hideously ill. But we persisted all the same.

So this morning: after getting completely lost and driving round and round the infamous ring roads of Leeds, I finally arrived, 40 minutes after my appointment slot. It turns out there was a long wait anyway so it probably worked out in my favour that I had been so late as I didn't need to wait too long to be seen.

The dermatologist was the same man who had seen me at the hospital. He examined me and said I would need a course of oral steroids and topical steroids but obviously I wasn't having any of that! After we'd talked about my extensive and complicated history for a while I could tell he was only really interested in following normal protocol and refused to believe my topical steroid dependency. I told him about how my allergies had diminished when I stopped using them and he said that it was just coincidence. I think not.There was no changing his mind though. He was adamant that this was "just the nature of the eczema beast" and that I would always be fighting it. Eye roll.

I asked about going back onto Ciclosporin even though I'm now afraid of using any immunos because of the high risk associated with me contracting eczema herpeticum. He said he would need to test my bloods but he wanted me to go down the steroid route first. I declined and started to get into a bit of a tizz, in the end it resulted in me bursting into tears. He asked if I'd like to think on it for a while, so I was whisked off to another room to speak it through with my mum and one of the nurses.

I think we must have been sat there for about an hour just going round and round in circles. The nurse had to leave the room at one point and when she came back she said she'd spoken to another of the nurses who suggested it'd be a good idea to admit me to hospital so they could monitor me to ensure a herpeticum attack didn't occur. Although I think it would probably have been the best idea, I don't want to use steroid creams any more, neither do I want to risk putting my job in jeopardy by having any more time off. If I was allowed to be admitted with just the use of moisturisers I would probably have said yes, but as it is... I just can't.

After much deliberation I went back to the dermatologist and we came to a compromise and agreed that I would go back on the Ciclosporin, providing my bloods and chest X-ray came back OK. I would also be taking a maintenance dose of Aciclovir to prevent the herpeticum from returning. This seemed to satisfy him and steroids weren't pushed on me again thankfully. The only thing is I have to wait 3 weeks to be issued with the Ciclosporin so we'll see how I get on in the mean time.

I am in a really bad place again and definitely need some form of intervention right now just to get through this as I need to start getting my life back on track again. Stress is definitely the trigger for my skin and moving to Leeds certainly hasn't helped me in the slightest. I just hope I see some small improvements soon with my dead sea salts. Also I was wondering where people are getting their colloidal silver from? I've heard that sometimes a silver substance can cause the skin to change a bluey/silver colour and is posed under the name of colloidal silver and I'd hate to buy the wrong thing. You never know who is reputable these days!

Any ways, I hope everyone else is well!

Thursday, 3 July 2014

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.


Wednesday, 2 July 2014

At a loss

Hey guys, so I thought I would update you on how I'm doing now. Well let's just say I'm not good.

After I was discharged from the hospital I asked about the antibiotics for my skin infection but was told I didn't have one and that it was "just eczema". I couldn't be bothered to argue so just thought oh well... let's see how I get on without them.

I was doing pretty good, getting over the allergic reaction and then this Sunday just passed I was so ill. I kept falling asleep as I was completely devoid of energy, I couldn't do anything for myself. My skin was back to being a full body warm, weepy, smelly mess and I could tell infection was present again. I didn't go to the doctor's until yesterday morning where I was issued with an antibiotic, coincidentally the same one I was given whilst in hospital, so I hope my body doesn't become immune to it. Recently there have been news stories about how our antibiotics will no longer work against infections soon because our bodies are just becoming too used to them, and this worries me a lot because of the amount of infections I do contract, and the amount of times I've been told to stop taking them halfway through a course.

For some reason I also asked for Dermol 500 because I know it has antiseptic properties and is something I've used frequently in the past. Oh what an idiot I am. I applied it last night and it was as if my skin was trying to expel it. I can't really explain it but half an hour or so after applying it, the surface of my skin became slick again with the product and it was unbelievably itchy! Also this is even more bizarre but I could taste it in my mouth! I knew my body had developed sensitivities due to TSW but I can't believe how it has reacted as of late... first with the penicillin based antibiotics and now with other creams. I know my body has become intolerant to an extent of white soft paraffin too, and also doesn't seem to like many of the natural products I put on either. It seems to be pot luck with them. I've been trying out Shaloah Skincare Calendula & Borage sooth & repair cream which sometimes works, but not always as well as some products from Salcura which I also don't seem to have had great success with but I may persevere...

Moisturiser withdrawal isn't an option for me right at this moment because of how much my skin is shedding and how thickened it has become from over-scratching. I feel like my skin needs to be fully quenched and hydrated but I'm struggling to find a way to do that.

I'm just so annoyed that my skin has been allowed to get to this state and I truly despise myself for not waking up sooner to the perils of medications.

I feel at a loss right now and don't know how much strength I have left to fight this. I just feel the need to complain and get my whinge out there so sorry if this post reads like one big ramble.

I also can't be bothered with arguments as to whether this is a "year TSW flare" or skin infection as I now know my body well enough to distinguish what is going on.

I hope everyone else is having a better time with their skin.

Sunday, 22 June 2014

13 Months Topical Steroid Withdrawal

Hey everyone, sorry for my lengthy absence. I'd been holding off on posting because I wanted to show you how my skin had changed for the good... only it hasn't... and yesterday it became its worst.

So the story goes, my eczema was getting worse and worse and actually became weepy in places, and so I suspected infected eczema. I already had an appointment Friday just past to get some more medication, but it was a nurses appointment and I soon found myself sorely disappointed that she couldn't help me. I went to reception and managed to grab a doctor's appointment as an 'urgent extra' and was told to come back in an hours time. I wasn't actually seen for a good hour and 40 minutes after my designated slot, so was rather annoyed that I'd wasted my entire morning waiting at the doctor's... but it was fine as I ended up being prescribed Flucloxacillin antibiotics to help out my skin.

I took 3 of these wonderful tablets and thought no more of it, as I happily drifted off to sleep that night. When I awoke on Saturday morning my eyes were swollen and my entire face puffed up, the eczematous rash that was only in some areas of my body had spread dramatically everywhere. I was worried. What the hell could have brought on an allergic reaction?

I decided to ring NHS 111 to get some advice as I figured the only new thing I had introduced was the antibiotics even though I have taken them a lot in the past. Despite the fact my breathing was unaffected she decided to ring an ambulance crew for me as she was worried that it could indeed be a drug allergy. I went off to hospital in an ambulance and was administered straight away with a cannula... which of course they struggled to get in! My skin was hugely inflamed and my veins completely hidden. They did manage in the end and it hurt. A lot.

I was then assessed by a doctor who was concerned about me and said that my treatment would be a course of oral steroids. I was devastated and worried about the risk of eczema herpeticum, of which we must all be aware by now that these suppressive drugs bring it out on me. He then went away to talk to a dermatologist who then made a plan to still issue me the oral steroids but to give me a back up course of Acyclovir. In the past despite taking a course of Acyclovir I have still ended up with herpeticum, and so I declined.

I could tell he was pissed off with having a difficult patient, so we ended up coming to a compromise that he would just issue me with a different strain of antibiotic and antihistamines BUT I would have to stay in the hospital much longer for observation purposes. I reluctantly agreed as what other choice did I have?

I was whisked off to a ward where I was kept for "observation" for 8 hours. Finally at the end of my stint, a doctor came to see me. He came to the conclusion that I was not suffering from a drug induced allergy but that it was just my eczema playing up. I didn't agree with him but allowed him to bring in the dermatologist who also wanted to assess me. He too agreed that it wasn't an allergy I was suffering from but eczema despite having seen the photo evidence from earlier in the day of my face all swelled and puffed up.

I'm sorry but I certainly do not agree. Eczema doesn't just cause you to have a swollen face! In all my time I have never ever had eczema that has made my face swell LIKE an allergy. Allergy does play a part in it. Oh well these people do get paid a lot of money to dish out the steroids afterall. Which is exactly what he did. I was sent on my way with a prescription for Eumovate to use on my face, Dermovate to use on my body and the Elocon afterwards. No antibiotics any more as they believe I never had infected eczema on Friday despite my weeping skin.

I'm not sure what my next move is going to be. Not steroids. I've come so far without them that it'd be a huge shame to start the whole steroid withdrawal again. But I really don't think my skin is going to fare well on its own.

I'm in a bit of a pickle really.

Oh and that cannula they put in? Yeah they never used it to administer anything. What a bloody waste.

I do still believe I did have an allergic reaction this morning and will be extremely wary of using penicillin in the future.

Me with poor swollen eyes



Monday, 26 May 2014

Kidding Myself?

OK so I admit defeat. I think I've been kidding myself that everything is fine and dandy, my skin is alright but the harsh reality is that it isn't. Right now I'm really struggling with it. I have widespread redness and I just can't stop scratching. I've actually reverted to wearing my Dreamskin pyjama tops to bed again in the hopes that I won't scratch myself silly. Yet despite my best attempts it doesn't seem to be working in my favour.

I am so upset that I'm back at this point. I do think the stress of the move has played a large role and it looks like stress will always go hand in hand with making my skin flare up.

Today I am having a moisturiser free day, laying unclothed sandwiched between a towel that I have laid out on the couch and a fleece blanket to keep me and my modesty warm. I'm so dry, itchy and flaky that I could cry.

On the plus lack of moisturiser = lack of redness.

My inner thighs 

Left arm

Chest

Close up of chest

Right side of face

Left side of face

Scabby, weeping, flaky ear.

The back of my right knee

Back of right arm, I've tried to capture the weepy bit which is shadowed at the top.