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! 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 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

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