Science & Dermatitis : News

In June of this year, a journal was published entailing the identification of a gene called CARD11. This gene, with its mundane name, is like a holy beacon of light coming towards me, while a choir of my favourite R&B singers sing the following lyrics off their hymn sheets…

“ I told you so “

This newly identified gene, found by scientists from the National Institute of Allergy and Infectious Diseases ( NIAID for short), shows it has direct, without a scientific doubt, correlation to the body having atopic dermatitis/ eczema. The findings were published in Nature Genetics. 

How did this come about? The team, performed gene sequencing for 8 individuals from 4 families, and that although each family had a distinct mutation affecting a different region of the CARD11 protein, each mutation disrupted its normal function in T cells – an essential type of white blood cell. 

In layman terms? When the gene was sequenced into each individual, each persons unique DNA dealt with it somewhat differently. Say for instance, my CARD11 gene has created atopic dermatitis that affects my face, while say, your CARD11 gene has created atopic dermatitis that solely affects your ankles… still with me? Basically think of it as a family tree, you all share the same name, but each of you have an individual first name, making you all that bit different, however you all share a common name. And that folks is my interpretation of the findings thus far. Now back to the gene sequencing…

The potential of this study was that glutamine, a protein , may correct the defective signally mechanism of the mutated CARD11. Glutamine is available as a supplement, and the researches intend to study the effects of glutamine consumption on individuals with CARD11 mutations/ severe eczema.

What is enlightening for me, since I first read about the glutamine supplement in June, and later renting the journal to read about the gene sequencing is that, for a long time I have spoken to other dermatitis sufferers online and I regularly mention that what I have is an autoimmune disorder. On occasion I have been told no you're wrong, you've TSW which is a whole different ball game, or others have questioned my thinking behind referring to dermatitis as an auto immune disorder. 

Sometimes saying it aloud feels dirty, that I am not allowed to call my skin issues an immune disorder, not when they're are people other there with cystic fibrosis and lupus, real immune diseases. My family and I have essentially been dealing with my dermatitis since I was two weeks old. I was two weeks old when I had my first flare, and if that isn't an indication there is something wrong with the immune system I don't know what is. 

The fact that this journal has found scientific proof that this CARD11 gene that is part of my DNA, is the issue is actually relieving. Especially when I have been saying it for the last year that all my skin stuff has boiled down to my immune system more than anything. Know, knowing this, I no longer cringe at the thought of openly calling my dermatitis an auto immune disorder, because that's what it is. Dermatology has always been seen as a ‘soft’ medical practise for some bizarre reason, I blame Greys Anatomy for that one episode where Grey and Yang visit dermatology, sit themselves on plush couches, are handed raspberry water and everyones scrubs are pale pink. Dermatology is not soft. My dermatitis is no less an issue than other immune disorders. This study will hopefully lead to more research into our bodies biggest organ, how it works, and why sometimes, it doesn’t. All I know is that right now, I’m no longer holding back when someone comes for me with a magical cream that fixes everything. I’m looking at you Rodan and Fields reps on Instagram, but in all seriousness this study is a huge deal, and I’m over the moon there is money being invested in such studies. 

REFERENCES:

GERMLINE HYPOMORPHIC CARD11 MUTATIONS IN SEVERE ATOPIC DISEASE
CHI A MA, JEFFREY R STINSON, YUAN ZHANG, JORDAN K ABBOTT, MICHAEL A WEINREICH, PIA J HAUK
NATURE GENETICS; JUN 19, 2017

SCIENCE DAILY NEW GENETIC MUTATIONS LINKED TO ECZEMA

Skin Stories : Scarring

I have a chicken pock scar right in between my eyes on the bridge of my nose. A little further down I have another scar that likes to make an appearance during the summer, this particular one was acquired when I was toddler when I fell head first into a bush of roses. That scar story sounds like the beginning of a fairytale somehow 

                   “… and so the young princess fell into the blooming bush of pink roses…”

Some scars though aren’t as lovingly narrative or am I particularly fond of. That being the acne scarring and viral infection scarring I’ve been left with. It’s not news to anyone, but I feel it bears major repeating : Acne and Dermatitis scars suck. Anyone who has suffered from post pimple hyper-pigmentation knows this too true to be self evident. Acne scaring can affect every age, from the beginning of puberty right into adulthood anyone can be afflicted with them. With dermatitis, the wear and tear of swelling, itching and scaling can take its toll on delicate areas of your face such as you're eyelids, lips, cheeks and neck. ( all areas I've been affected)

Acne scarring manifests as red or brown marks - sometimes if you're acne was deep you’ll notice even a purple tinge if you're very pale- that can last weeks, and sometimes for the quite unlucky, months. Dermatitis ‘scarring’ on the other hand can weaken the delicate skin around the eye and lips. As a young adult who suffers with dermatitis, I’m in the lucky category that I am still producing collagen that can lessen the effects of the dermatitis on these areas. But I am, still left with the dry lines around my neck and even my torso is affected because my epidermal layer is so damaged and dehydrated. One of the major lingering affects of years of dermatitis is hyper pigmentation and easily inflamed skin.If you've been afflicted with dermatitis on your eyes like me, maybe you’ve noticed very fine lines around the lids and under the eye, and how sensitive they are to almost everything. 

I do consider myself lucky as my skin is becoming clear in the brighter months of the year, meaning I can slowly allow my skin to get some natural Vitamin D to help the skin on my face - but of course I am wearing factor 50 when I’m out and about, even on grey days. As someone who has both types of scarring, I have been trying everything to help my skin look healthy again. 

Telling you to eat grapefruit, use Johnson's Baby Oil and drink water is not on this list mind you.

But I am also a realist : I realise that some lines are not going to go unless I look to lasers and even *ahem* botox. I still laughed and enjoyed life when my skin was at its worst, so of course my laughter lines around the eyes are a smidgen more pronounced than others my age. And the purple scarring may not budge completely unless I were to look at Retin-A. But those high grade skin treatments will remain out of reach for the majority thanks to both the price, but also for those with sometimes infuriating, dermatitis and sensitivity. Most of us  dermatitis warriors, will never enjoy a face mask completely relaxed, thanks to the underlying stupid worry of possibly reacting to it. ( I swear I am not bitter. Maybe I am sorta… I would really like to enjoy a spa day okay!)

That said though, there are still quite a few products, which thankfully are all non prescription, that do a pretty good job at smoothing out those scars, and helping evening your complexion. I’m now a month into scar healing, and I definitely my more pronounced scars on my chin are less obvious. To my eyes anyway. Which I guess is more important, as we are all our own worst critics. 

Without further rambling, maybe I should, like, introduce some products that have been tested by myself, and some others which promise to fade scars overtime which I’ve investigated, researched, and pried into their online history of customer comments. Yea? Lets get to it then.

Bio Oil.  - Tried & Tested

A legendary product that has divided many people on its lofty claims that it will diminish scars, stretch marks ( does it though? ) uneven skin tone, signs of ageing and dehydrated skin. So this miraculous oil, I can personally attest does indeed live up to most of its claims. I use this every morning and night after cleansing - I’ve been messaging it into my chin until my skin has soaked up all the oily goodness. I have indeed noticed a change in my skin tone, and certainly the scarring on my chin. I woke up just this morning amazed at how even my skin tone was, I usually awake to a few blotchy patches around my mouth and eyes. The stretch marks claim however I’m not too sure. Has anybody ever noticed a difference in their stretch marks from bio oil? If so, please let us all know, still hanging on to the moment I hear someone that it actually worked for. But for scars? It works a charm. I buy mine from pennys cause I’m cheap and cheerful like that, or in Meaghers Pharmacy in the Mater so I can avail of my employee discount. 

 

Bio Oil - 8.99 Primark 

Drunk Elephant -  Reviews & Research

I only recently heard of Drunk Elephant, so when I came across this night serum that exclaims to “Refine & Regenerate” I was interested to know what was in it other than raspberries and chestnuts (Imagine that in your salad.. blegh. Desert though?)  For all the sensitive skin folks out there, choosing a refining and regenerating product can be tricky. You can’t go for harsh products or you may react and your face may fall off. Over dramatic I know, but the fear is real. 


The one ingredient I don't go near because of my delicate like-a-flower skin, is salicylic acid, it’s just way too harsh. So when I saw the Drunk Elephants night serum contain gycolic acid, I was a happy bunny to be able to add on to this list. Glycolic acid is less sticky, and certainly less irritating that salicylic. (And one of the most talked about ingredients for exfoliation currently, just by the way. ) What it does is rid your pores of blackheads, exfoliates your dead skin and also the magic trick, lightens your pigmentation. This wont be the only product I feature on this list with gylcolic, but this is certainly on the pricier side than say.. bio oil from pennys…I did reach out to Drunk Elephant about samples, as sample sizes are the best way to try out a new product without spending all your wages. Unfortunately the site doesn't samples, but instead they suggested going into my local Sephora ( I WISH ) and the folks there would be able to sort out a sample for me. When I do get my hands on a sample, I'll let you all know if it truly does what it claims. 
After discussing what was happening with my skin, the amazing Clinique technician was able to suggest their 3 step Anti Blemish range. Me being me though, waited to buy the ‘travel size’ when I flew to Eidenhoven 2 weeks later. Since then, I have always kept a bottle of the Clinique Anti Blemish Solutions Clarifying Lotion ( what a mouthful ) in the house. Whats amazing about this bottle of liquid is it acts as so much more than just a ‘toner’. Taken away from the other two products in the Anti Blemish Range, it is an amazing stand alone product. This lotion exfoliates dead cells, unclogs pores, reduces excess oil, and according to the site - is formulated to soothe irritation and redness. I have been using the lotion again in recent months, after I cleanse, and have seen improvements in my skin texture and pigmentation around scared areas. I honestly think the improvement in my scarring comes down to the use of this lotion and bio oil. 
But. I do have a qualm or two. The smell of alcohol off the product is strong, which would make a sensitive skin gal think it is not the product for them. But the technician insisted the alcohol used is “cosmetics grade”, makes it sound nicer, but is still alcohol. Also, the fact this product unfortunately contains salicylic acid, is why, it stings like nobodies business. Thos of us who have any crack, or dried skin, and decide to use this lotion that works wonders for scarring and texture, will suffer with the stingy-s for what feels like a lifetime, but is only 10 seconds in reality, afterwards. This ingredient is the culprit in why so many people complain of irritation after using it. But, do I recommend ? Yes, because this is about scarring and pigmentation, which it certainly works on. This lotion may be part of their 3 step Anti-Blemish solutions, but I happily recommend this toner as a solution for scarring too.

Drunk Elephant. TLC Framboos Glycolic Night Serum $90

Clinique- Tried &Tested

When I first started developing acne I was on cyclosporine. At the time my skin had no clue what it wanted to be. I was dry, I was oily, I was sensitive, I was congested, I was, basically a nightmare. I was running out of cetaphil cleanser, and at a loss of how to actually help and treat my skin, so I paid a visit to go ol’ Brown Thomas Beauty Department. I’m pretty sure I spoke to most of the skincare brands, but Clinique was the only one that stood out ( eh hello, dermatologically tested, obviously it stood out ) 

Clinique Anti Blemish Clarifying Lotion €25

Thats it for now! I've purposely only reviewed two products I've tried as these are my go to products right now for scarring problems. I hope you've found this information useful and had fun reading it. Have you ever used any of the products I've mentioned here? Tell us how you found the product! 

What is your go to product for scarring and hyper pigmentation? 

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My Magical Skin & Me Part III

      

   17 - 19 Feb 
Week 1 on Imuran

"Face has gotten so blotchy again. Although, I'm happy because I am expecting a change in my skin in the coming weeks. The blotches of red on my neck are growing and spreading their kingdom onto the top of my shoulders. I am expected back in the clinic on Tuesday, to take more bloods and see if my results from England are back yet. If they are, praise to be because then my daily dose can be increased to something a bit more substantial. I've noticed the texture on my cheeks are going scaly again, and on my hands I can actually make out the shape of flakes of skin - like a lizards or snakes, the shape is that obvious. Of course I am happy there are no signs of infection any more, but the dryness of my whole body is something else. Even my legs at the minute are mad itchy, almost like a bit of folliculitis.

What is odder again about my legs is that, the minute I take trousers off and go to bed, lying down seems to ignite the fire and it feels like my legs are crawling. The sensation is so bloody weird because it only happens when I release my legs from clothing, so the last two nights I've been wearing leggings to bed to keep some form of 'pressure' on my thighs and calves, it seems to be working because I have actually slept through the night without itching and little red bumps appearing. I honestly think at times I'm allergic to myself. I'll just have to mention it to the ladies on Tuesday.

Oh. Remember that smell I mentioned? The smell of rotten putrid something or another that seemed to be trapped in my nose? Well, it is still there, still making me feel slightly insane, that such a smell could be trapped inside my nasal cavity. What is actually happening to my body, because it is as if each week something new is coming to the surface to test my patience.

Getting to the gym definitely raised my spirits though. Although the sweat really stung my eyes, the same way crying does. I feel lucky to be a member of a gym where no-one throws concerned or unsure looks my way when I walk out with my neck and arms on show. Plus I felt I needed to go the last three days, during the week in work I kept having what can only be described as heat attacks. My hands and wrists would go on fire and I could spend up to 30  minutes trying to regulate my body temperature to cool them down. My whole body just seems extra sensitive this week to food, the temperature changes, and my hormones too are probably coming into play as the Painters are due in town in the coming days. Ugh, just thank god for the community on Instagram and my fam to pick me up when things are bad. I need a holiday so bad."

extract from notes app taken over the course of the first week on Imuran. 

20 Feb

Still no sign of my results from England. Bloody hell how long are these going to take? Woke up this morning to small crack down the middle of my bottom lip, lashed on Epaderm to make sure it wouldn't split further as it was actually quite sore, and each time I spoke I could feel the skin splitting further. 

8.05am I sat down in the clinic and checked on my lip to see it getting drier, no matter what I did it refused to retain any moisture. 

8.45am I check on it again, there was one more person ahead of me in the queue so had a mother few minutes before I was called in. The split, has turned a yellowish green. Are. You.For.Real. This colour only means one thing : infection. In the space of an hour my body manifested yet another infection. Well at least I'm in the right place for them to look at it and figure if its impetigo again. 

9.25am. The reg has said everything looks good, asked her about my lip and the colour being so indicative of something being askew. She didn't even bat an eyelid when I pointed it out to her, and again when she told me it was fine and just to used Hydrocortisone and Fuicidin H on it till it eased up. She did a full body inspection this time, and decided to raise the fact that I have no cuticles. Okay, yes of course I have cuticles, everyone does, but I have no visible cuticles. I had never even noticed if  I'm honest, and I don't get my nails done for a technician to ever comment on it. Seemed to confuse her a bit, and she took note of it, she never followed up on what it could mean if anything at all. Just another mystery into the giant mystery of my skin. Regards my legs, had no clue and didn't actually bother to appease me to give me even a reply to why my legs could be acting so weird. Another hi tech prescription for the suppressants was written and I was sent on my way for another 2 weeks, at that point we hoped the results from England would be back.

Oh the joys when your doctors don't even know whats happening and you're left with more questions than answers, this was becoming a regular occurrence too. I wasn't loosing hope, just disappointed that not even my doctors had an answer for me. 

21 Feb

I got such a fright this morning. I was just doing my usual morning time stretches in bed and rubbed my neck when I felt it. What felt like at the time like the largest freaking lump to ever exist in mankind was in reality about the size of two baked beans smushed together to form a lump directly under my chin.  I got such a fright and roared down to Mam. My mind went directly to the worst case scenario of my thyroid and the c word, or maybe just a benign tumour. But that was the first place my mind went, I had no clue what it was, and to find a significant lump that appeared overnight is mind boggling. I can actually still remember the sensation of sheer panic run through my body as I looked at it in the mirror. 

And oh yea, the split in my lip? That was now a nice shade of green. Wonderful. What an excellent way to start Hump Day. 

The whole day in work myself and my mum spent googling the mysterious lump on my neck. What eventually came to light was that it was my lymph nodes. I had the slightest idea lump nodes even existed in that area of your body, but then a few weeks earlier I had no idea they existed in my arms. So, there you go every day truly is a school day. As they day progressed I my chin area felt heavier, and an ache began to spread around my jaw and into my ears. From what I could find online, even just basic information about lymph nodes, I had an infection of some sort....and a serious enough one if the size of my nodes where anything to go by. 

Hate to be the one to tell my reg I told you so the following week. But well I told you so and you didn't listen.  ( I actually relished telling my reg this )

                              

                                22 Feb -

You'll recognize this photo from when I posted it on Instagram stories. I looked and felt so bad even at this early stage. Already my head throbbing with the pressure of the lymph nodes swelling, doing their utmost to beat the unknown infection my body was harbouring. 

               
                23 Feb -                                                                24 Feb -
        

The next morning I woke up like this. From this point on it just got worse and worse. I messaged my dad as I was meant to work that evening and the following day. He went straight to the Occupational Health in the hospital  to show them the photo and then onto the clinic with the news that I was considered 'highly infectious' and 'unfit to work for her own safety and those of patients'. What we thought at the time was impetigo was taking over my chin as it's kingdom, and what made it worse for me was I actually felt sick. I felt tired, swollen, and my whole chin and jaw was just aching from the discomfort of the swollen glands - which were bigger again - and the sores which were pulling at my skin. The clinic when presented with these photos quickly handed over the prescription for a round of antibiotics to be taken if 'needed'. Damn it Elizabeth I clearly need the antibiotics!

There's not much more to say about this as I was in so much discomfort, I did not have the emotional energy to share this infection online at the time it was happening because it was just too much for me.  I didn't even write anything down at the time because all I could muster the energy to do was move from bed to couch and binge watch Netflix, while sporadically eat throughout the day - mainly soup because eating was a complete bitch. The crust, scabbing, was... disgusting.

I felt disgusting.  I was disgusted with myself. 

24 Feb

No-one knows what type of infection I have. How can three qualified dermatologist not know what is causing this? I swear the antibiotics aren't doing anything, as it's clearly getting worse. 

"It could be viral, bacterial, it could even be airborne, we just don't know right now. 

25 Feb

I've been put on Zovirax anti-viral tablets to take on top of my antibiotics. They still don't know what type of infection I have, but the fear is that I have both a viral and a bacterial infection now. 

        

           26 Feb  -                                                                       27 Feb -
           
I felt horrible. I had to clean my face three times a day, and although it caused utter pain that tingled down my spine, I had to knock the crust off so I could apply the cream I was given, directly to the wound in a bid to make it heal quicker. I had been sent for more blood tests, and we were already waiting on MRSA results to come back. You know the saying of the millenniums? "I just can't" and  "Cant even". Well, those phrases were the only way to describe my state of mind during this infection. I felt like I was never going to heal, and with none of my doctors knowing what I actually had, just made it feel so much more worse. When it began to travel to my eye I lost it one morning when no-one was in the house. I just let a roar out at the mirror, and cried, brushed my teeth, piddled and went back to bed. It was all I could manage.

I had to change my bedsheets everyday, I couldn't use a facecloth or towel more than once. I went through two 200 pieces pack of cotton buds.The double ended type too. All so I wouldn't touch the infection directly in the fear of spreading it. I was wearing gloves at night too, and trying to sleep with my hands tucked away so I wouldn't be at my face.

On the 27th it looked so much worse, the crust was very prominent and what can be described as little punch hole marks, were spreading around my chin. I could not wait for the clinic the next day to get some clarity on what was going on with my body, at this point I had been out of work for more than a week, it felt like a lifetime since I hadn't been outside my house either. I felt like my life was out of my control and some, all mightier divine being was taking the piss watching me struggle with my skin, enjoying their latest reality TV show.

     

        28 Feb -

I feel like its drying out. Which, I can't decide if this sensation is worse than when it was oozing and tight. This, this feels.. I don't know how to put it into words. All I know, because I can see my reflection staring back at me, is that it looks worse. The colour has even changed. And I'm terrified of the bacterial infection traveling to my hands since I've open wounds.

I stayed in bed for most of the next two days. Not really feeling at all like myself, or even bothered to do anything that meant leaving the house. At one point my dad asked me to go do the lottery at our local just down the road - where most the shop assistants have seen me on my worst skin days - but I refused to go. I was managing my routine of getting up washing my face, cleaning my bed, hoovering my room of any dust etc, washing my face again and again, applying creams, taking medications, and binge watching Once Upon A Time on Netflix, but the thought of someone seeing me like was too much for me to handle.



Indeed I was starting to feel better and wasn't sleeping till midday anymore, but physically it was still to put it bluntly, and one of the rare times I'll swear on the blog, fucking awful to look at. I did see my consultant again today, with actual blood test results. And what came about was that while I am MRSA free, I had two infections. My primary one was the HSV1 simplex, and underneath that I had a secondary bacterial infection.

           
            29 Feb -

This infection was nothing like I had ever experienced before. I could actually feel the infection under my skin. The tingling, and intense and acute bursts of itchy heat that would pop up around the marks would be enough to drive you insane. By the end of February the overall rooftop crust as I'm going to call it - the crust that primarily covered the punch hole marks, it was golden and covered the wounds kinda like a roof - was gradually disappearing. I was at long last starting to actually see the wounds of my infection.

       
            3 March  -

Day by day, more of my chin was becoming clearer. The first few wounds from the beginning of the infection were looking better, and were no longer forming a golden crust. No crust means no infection right? Hopefully that's what I wanted to hear when I went to the dermatologist again on the 7th. I was due to see friends for brunch this weekend, and while I was on the mend, and new by the Sunday my face would look better more so, I had an anxiety building inside me of how people would look at me on the train on the way into town, or how the waitress might perceive me as she took my order. Of course I came over, and marched myself into town, but that was after my mum telling me to suck it up basically and not let this get in the way of something I was looking forward to. To actually live my life. I still worried the whole train journey in that someone might actually be really rude and ask me about it, or someone might know by just looking at me it was herpes simplex virus that I had.

And I think it was the fact it was HSV 1 that caused this, made me feel so anxious. So many people still in today's more sexually diverse and understanding society ( supposedly ) still perceive this virus as a taboo, and think it something only certain type of people get. I got mine from an unwashed glass in a bar, a glass that I wasn't even drinking alcohol out of mind you. But still, in my head this virus was getting to me, niggling away at how people would perceive me in the future. And was I now to expect having cold sores all the time? Of course that would be just my luck alright.

   
       4 March  -

 Very little crust, no new holes, and my top lip is reducing in size at last. Today was a good day. I have scabs rather than crusts, scabs which are lifting off themselves, because the one thing I can't do at this stage is pick them it's just going to cause scarring. Supposedly with viral infections you don't scar? But I'm unsure of how true that is. Time will tell I guess.



 7 March -

I recorded this video straight after visiting my clinic, for what I thought would be a good visit that would lead me to my reintroduction into society. At this point I had missed college, both of my jobs - I work two - any of my gym classes, my pole fitness, I had even been asked out on a date during this time, which I declined because of how I looked. 

I couldn't wear makeup, and when I explained that to the guy in question he understood and still insisted we even go to the cinema, that he didn't mind at all. But my mind was made up, and there was no budging me from my armchair in front of the PlayStation covered in antibiotic cream and my hair in a messy bun. There was no hope in hell, I was letting a guy, let alone a first date, see me in the state I was in. Which sounds quite contradictory of myself because I post photos of my face bearing all aspects of my dermatitis online for the world to see, so surely he had already seen photos of what I looked like on bad days? Regardless that date did not happen. But now I have the power of realization to see that this guy saying he didn't care and insisting on doing something to get me out of the house, just proves that there are men in the world who don't solely focus on your looks, but your intellectual worth and might actually enjoy your presence not just your ability to beat your face. 

On the 7th I actually got the proper name for my primary infection: Herpeticum. 

The name initially made me want to go bury my head in the sand, wait for the tide to come in and let it just drag me out to sea where the mermaids and other scaly creatures of the sea would accept me and make me one of them. After saying the word a few hundred times since getting the name of my infection I've become immune to the what the name entails, and I no longer want to be dragged out to sea.

The 7th of March kind of marks the last week of my infection being intense as my doctor realized that being on immune suppressants meant they should have doubled my medication dosage as it would take longer to take affect because of Imuran.  I did run into trouble the following two weeks with cold sores, golden crusts still appearing, and it wasn't until the 17th of March that my face was actually clear of all signs of infection. But as I now have HSV1 in my system I have to be aware of the signs of Herpteicum and how to combat the virus when it raises it's nasty head. 

Do you think I could have dealt with anything differently? Have you ever experienced Herpeticum? How do you feel about seeing photos like these? Let me know in the comments section or on my social media channels. 

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My Magical Skin & Me Part II

3rd Jan -

3rd January 2017
First dermatology appointment of the New Year.
Can. Not. Wait for Doctor Shudell to see how good my skin is. Okay there is redness, I know straight off the bat she'll comment on that, she wants perfection. Baby pale skin like the rest of my body. But honestly, I think it is great, yes there is dryness, and the texture is kinda off, but no open wounds or any signs of infection. It's fantastic compared to last month. Hands are feeling good, neck is showing no signs of blotchy redness. The only thing I felt worthy to comment on was the off coloured non-spots-but-spots - that were evident on on my cheeks. During the checkup, the usual low down happened, my bloods were good, my body was handling the roaccuante and cyclosporine dose together pretty well. I was reaching my cumulative amount of both medications by the end of the month. "Cumulative amount of medication your body can take." Nearly a full year since I had started cyclosporine, and what seemed like a lifetime ago since I had started roaccuatne. At long last I was finally coming to my last few weeks on the drug. I had a lot of big decisions to make in the pretty near future, but one thing I realised was lingering that no-one really addressed in the room was the infection I had over christmas. What was it? How did I contract it? Will it come back? Is this normal?
All questions I should have asked in that consultation but never did.

       

 

 6th Jan -

6th /Friday Jan
I had some great plans coming up that weekend and the following too.  I had a family shindig happening on the Friday and brunch with the girls from college on the following friday. It felt great not to be worrying too much about plans that involved getting dressed up. My skin felt good, and for the family dinner I ensured my hair was blowdried to perfection and put barely any foundation or powder on. I was with family after all and no-one cared if my mouth was red or not, the night was still very much in the category of christmas celebrations and my mood was not dampened at all by the slight redness occurring around my mouth. I stuck to a Vitamin E wonder cream from pennys that gives a wonderful dewy highlighted complexion, but decided to go town on my eyes and brows. At the end I caved and decided I would look better again if I resembled a disco ball with my highlighter.

       10th Jan                                                                                     14th Jan


On the 14th January I woke up extremely flared. Even my arms were up, this in particular hasn't happened in a long time. I subconsciously didn't even wear makeup last night when I went out for drinks with the girls. Thank god I didn't otherwise I could be in a much worse scenario. My Arms were covered itchy little plaques, basically hives. My hands were roaring red, and starting to crack naturally. There was plenty of evidence from the dried blood under my finger nails and on my white bed sheets that I ripped myself to shred during my sleep. For the whole weekend I lived in light tank tops and tight leggings to allow my overheated body cool down.
Somehow on Friday night, I had momentary memory loss as to why I don't drink cocktails. The night out at Capitol was fantastic, especially when you can get two cocktails for 7 blips. But those cocktails landed me with a week of a flare with a demonic itch covering my upper body. I got it under control by having lots of emollient baths, only washing my body envy third day - believe me, when you're in this type of state you'll do anything to reduce the itch, and that sometimes means lessening shower time. When I did have to have a proper shower I made sure I spent time in the gym sweating out any remains of the alcohol from my body. This process works for me, I tried my best to not use steroid creams on my arms after going so long without having to use strong ointments, and the same went for my hands.

        

  16th Jan -


By The 16th my hands were falling apart. I actually felt like my skin was dissolving away from my fingers. My fingers were flaking, cracking, red, weeping, oozing - just think of all the horrible descriptive words associated with skin disease/infection and apply it to how my hands looked. For the first time in a year the dermatitis on my hands was causing me pain. My lip had cracked once again, and a goldish crust had begun to form over it. Again it seemed, I was impetigeness. Thankfully, I got an emergency clinic appointment for my doctor to see the state of my hands and how the initial allergic reaction from Saturday had developed into a much worse state of affairs. I was given a prescription for another penicillin antibiotic and was to use various topical steroids. There were sure I had a bacterial infection regards my hands, and my mouth too was on its way to becoming another case of impetigo.

As the week progressed I did find myself using the Benovathe ORD  to help with the healing process of my arms and hands, and Eumavate on my face - as my forehead and chin were in a right state of flakiness. It felt like I had a chemical peel.The thing is, you can avoid using steroid creams for as ling as you like, but when it comes down to feeling like a lizard shedding its skin and being unable to grip a steering wheel of a car , you have to accept it is time to start reapplying steroid creams.
For the rest of the week I could feel my skin flaking off, any time I rubbed an area of skin inflamed, a layer of flakes would fall to the ground. It was disgusting. I felt disgusting. My hands in particular where the main source of grief, I had this smell in my nose, the only way I can describe it was that I could smell my own skin, and it smelt like infection. The whole healing process of my hands was horrendous. I wouldn't wish it on my worst enemy. This week in particular I was keeping a food diary too, and there seemed to a connection to (processed) wheat products and heat attacks. After lunch on three separate occasions, I had massive fits of itching my hands. Within minutes of finishing my lunch, my body would go on fire, but specifically my hands felt the worse. I found running cold water over them helped, or applying pressure to them reduced the heat attack significantly. But it still would take anywhere up to twenty minutes for them to feel usable again.  This went on right up to friday until I decided to completely cut out bread from my diet, as it the heat attacks were being cause by shop bought white pan, sandwich bread, pitta bread and bagels. So no more of that I'm afraid.


Thankfully by Sunday 22nd my skin felt normal again. Between the lie in I had that morning, having so many emollient baths throughout the week and applying steroid creams the correct way, something actually worked and my skin felt right as rain. I read so often of how TSW sufferers and other dermatitis sufferers don't believe in the use of topical steroids or even moisturiser, and it just baffles me. When they find they're way to my blog or Instagram profile I am regularly told to not apply such harsh creams to my face. Now, the thing here is, my Doctor, the medical school, certified, master welding, dermatologist has instructed me to apply such creams for the good of my health. Having questions for your doctor, being curious is good, have as many questions as you want. But. Once you start doubting your doctors opinion, who do you go to when things go from bad to worse? How do you cope with your infections? How can you give others advice when you don't even listen to the medical professionals advice? Just think about it for a little bit. Because during this flare, it became very evident to me that there are indeed members of the eczema community online who don't believe in their doctors ability to help manage their condition, and somehow believe that there is a cure for what we deal with. This is a completely different discussion, but I felt it so necessary to touch on in this update as the opposition to medical advice becomes more evident with each flare I get.


                       
                       24 Jan

Tuesday 24rd Jan 
AM
Last night I went to see Split with my friend Grace and fitted in a good ole chinwag before and after the movie. I had been working 4pm - 8pm in the hospital before, and I slept in by accident -oops- so my breakfast was all a bit over the place. I didn't eat something till half 1 in the afternoon then, I had some bread, beans and fruit salad as my snack in work on my break. By the time my shift ended I was starving again, and decided the best thing to do is just grab a McDonalds before the movie. I hadn't had one since before Christmas and figured it was a treat night so I wouldn't guilt myself over it, plus I don't get any food allergy like reactions from the MaccyDs so regards my skin I was choosing a better option that say a chinese later that night. At the cinema I got a normal popcorn and indulged in M&Ms. What a bad decision that was I learned on Tuesday morning. I woke up feeling like I had had botox. My skin was so tight all over my face, as if someone was standing behind pulling the skin from each cheek backwards. I went to work that morning in the RDS for the Craft Fair, and as the morning went I felt my skin get itchier and itchier. The best way I could describe it was as if I had had a seafood allergy. My mum reacts to squid and I've seen how her face goes - my face was just like that. I had really significant swelling running right to the edge of my chin, and felt like sandpaper to the touch. It was awful, and if I'm completely honest it was a bit distressing, as this was a completely new way for me to react to something. To deal with it, I went ham with cold compresses, now that meant going to the bathroom and waving my craft fair catalogue at my face and neck like a mad woman of menopausal age going through a hot flash.

PM
Eventually it did get to much being at the RDS as my skin was crawling and the hives had expanded to my arms. En route home, I was stuck in traffic on the quays when I got the most frightening pain in my breast. It was sharp, it was initially on the surface then it went deep under my nipple. It was the type of pain that your instant reaction is to cry because it is so unexpected and frightingly sore. I was all of a sudden in a panic, and knew something wasn't right. My breast after the initial sharp pain became a constant dull pain inside the tissue, and after speaking to my mum I rang my local GP. I must have had a lot of good karma built up or something because I got an appointment for that day.
Turned out that the bacterial infection I had been harbouring since christmas had never actually been gotten rid of. Being on immune suppressants was affecting how my body and the antibiotics were fighting the infection. My GP explained that while antibiotics are given to clear infections, your body usually develops antibodies as the infection weakens then kills the say, last 5%, of the bacteria as to know how to fight it in the future. But because of my immune suppressants, my body wasn't going through that stage. Because of all of this, the bacterial infection had travelled, and I had a abyss in my breast. The pain? That abyss rupturing. Yep you heard me, I had an abyss in my breast which was a direct complication of the infections. Whats worse? I was on the last day of my second round of antibiotics that exact day! My GP explained that I needed more antibiotics but a broader one to clear the infection... so another course of antibiotics for a week to help clear the infection in my breast.

You can see the discolouration on my hands and arm from the localised swelling and reaction. You can in the middle picture above that the colour of my hands seems odd, especially when you compare it the colour of the lower part of my thumb. This 'discolouration' was completely raised, cracked skin, that was swollen and leaking fluid. My blood vessels were under so much pressure from the swelling that the fluid had nowhere else to go but out through my skin 

    

By Wednesday 25th I thought I could feel a difference. I was having emollient baths every night, drinking so much water to try flush my body of anything that was causing the allergic like reactions.
I went to the gym both Wednesday and Thursday to try sweat out the toxins yet again, in the hope I could go to work as normal that Friday. It wasn't till the Saturday where things got out of control. I woke up with hives covering my whole upper body, my hands were swollen and leaking water - lymphedema. My hands were in tatters. I could physically see the water seeping out of my skin. My skin had obvious fissures they were that dry. I was so drained that day I just stayed in bed. I just did not have an ounce of energy to do anything other than eat intermittently throughout the day.

  

                    3 Feb 

On the 3rd of February I was back in the clinic. During the week I struggled to do anything with my hands, they have turned into the claw of discomfort again, meaning simple things like holding the steering wheel of my car was painful. I began to realise that what was happening to my skin, the infection I had, was affecting my daily life. It dawned on me that, if what was happening to my skin was occurring on my insides I would have been admitted to hospital weeks ago to be taken care of. But because its superficial it's not seen as debilitating as an internal issue. This time when I was in the clinic, I met a new reg before seeing Emma. This new registrar to the clinic actually used the phrase

                                                  "you could just be run down?"

Run down. I could be "run down". I felt like saying, woman I am on immune suppressants, if I'm run down how bloody so? Am I deficient in something? Am I lacking vitamins or minerals? Hell I couldn't walk through the hospital without tearing up, my hands were that sore and cracked. Run down. Jesus.  Not once yet had they swabbed me for lab tests. Instead, I got myself to Occ Health in the hospital who did a basic nasal, gland and skin swab and scrape to send off for tests. By the time I was seen properly in dermatology I felt like my hands were falling apart. I could smell my own skin again. They were so so sore. I was wrapping them as much as I could to protect them from drying out more and myself from scratching. I think it's important to remember that at this time I was still on my immune suppressants as I said, cyclosporine, and I had not missed any doses while this was happening. I was given plenty of more steroids to apply, as well as an antibiotic topical cream alongside a new one called Elecon. One of the days I ended up in the dermatology house on eccles street - where I would go for UV Therapy. The head nurse, Anne Marie gave me new moisturisers to try out and the Elecon as it is also an antiseptic. At this point I felt like I was reacting to the Benovathe so this new cream was extremely welcome. ( This was on the friday)

Monday 6th

Over the weekend I could see an improvement from applying the Elecon alone. But as it was prearranged, I was back in the clinic again that Monday . This time, they took all the swabs they needed and more. Unfortunately, these swabs were to be sent abroad, to England. Specifically to see if I had a certain enzyme in my body that would allow me to absorb new medication.
The plan had always been to come off cyclosporine this month, but with the infections the idea of coming off the medication that has kept me in good nick, and possibly the only reason my whole body wasn't affected by these recent infections, seemed extremely daunting.

My mum came with me too to ask any questions and queries about the change in tactic. Cancer was spoken about, photosensitivity was spoken about as was things like topical steroid withdrawal, leaky gut and if there are scientific links between diet and chronic dermatitis. Which by the way there isn't. There has been nothing proven to say diet has an affect on dermatitis, but that being said I personally already knew too much sugar aggravated my skin - When I mentioned this it was pointed out to me that I although I had an "allergic reaction" of sorts, it was not dermatitis that was brought on by the reaction, it was hives, another form of skin issues but not my normal ( god, did I just refer to all of this as normal? )  dermatitis.  Not being on any medication at all was even discussed, which believe it or not was the end decision we came to. I very firmly made the decision to be off all medication for a week, this also gave me a week to decide if I truly wanted to begin taking a new, longer term, immune suppressant.

   13 Feb 


Tuesday 13 Feb

Happy face, smiling, happy face, smiling. Today marked the beginning of a new course of medication - azathioprine. After a week off all my medication and topical steroids, I was neither worse or better off than prior, I know it was only a week, but it only takes 30 minutes to react to food, so how were we to know if my skin would change or not in the week. Regardless, it was nice not to wake up every morning and take a concoction of tablets and apply layers of creams. My open wounds and sores from my last infection, were still healing but not yet in the later stages of new skin showing - my wounds usually turn purple when they are in the alter stages of healing, I know at this stage to do my utmost not to scratch as I'm close to it being fully healed. With the new medication, I was reminded that it could be minimum 4-6 weeks before I see any improvement, down to the fact that Imuran is not as potent as cyclosporine as it is designed as a long term medication, so it is a slower release. I intended to buy lush dream cream again as I started to remember how good it was at aiding in the healing process, so that was on my shopping list alongside my new pharmaceuticals. I left the clinic extremely happy, but of course apprehensive as to what wonderful silly side effects I may get in the early days of starting Imuran.

In the next post of the series I will be going through my first few weeks on Imuran and at long last discussing the biggest infection I've had to date in its entirety. If anyone has any questions or queries don't hesitate to get in touch via Instagram or email lesleygoulding93@gmail.com

L x

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