3 weeks closer to healing…….

So big news this week is that the NEA have made an announcement about TSA! Whoo hooo

http://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/

It is certainly a big step in the right direction, and hooray for the work of ITSAN! Hopefully there will be more research and more and more people saved from this debilitating condition.

It does imply we are in this ts mess as we ‘used it wrong’ I mean there is only certain number of ways you can apply a cream. Whether you use it with ‘ breaks’ with moisturiser or without, under wet wraps or whether you measured it on your finger tip first, or used it standing on your head with a feather in your arse, the fact is you are using it and there is the potential for addiction. There seems to be this gap between what the drug companies know and what is taught to doctors and passed on to patients.

The risks of topical steroids are far greater than simply ‘ thinning your skin’. If the box had ‘warning can cause addiction’ on the box and a picture of my horrible hands or face and a pile of skin, pretty sure no one would use it, or they would use it for 2 weeks only and no more and run for the hills.

You tell em Mr.Mackey! drugs are bad, especially topical steroids M'kay!

You tell em Mr.Mackey! drugs are bad, especially topical steroids M’kay!

So I am 3 weeks off ts this week. Skin is no worse than when I was still dabbing on ts, in fact its probably less oozy.

People have said face looks a bit better and I just look sun burnt. Still swelling around eyes and lots of shedding from face every morning. The amount of skin I got in my dyson was horrible. The amount of daily skin shedding in TSW is massive, something you do not get with ‘ eczema’ My body is trying to remove all the nasty steroid damaged ‘skin’ This may be why I can’t stop eating and yet still lose weight as it needs the calories to make skin and repair itself.

red face at night... not a delight.

red face at night… not a delight.

I get one ‘good day’ a week at the moment but its random as to what day it will be. Red sleeve reduces to pink and skin is more dry than oozy and I’m not cold. So I try to use this day for something (like going to see my horse, going for a walk or the supermarket etc)

I still sometimes feel very hot but not as ‘burn-y’ as when I first started tapering. Losing more hair again too, not noticeable yet. It just sits on top of my head in a bun as I don’t want to have to bother with it. Hair has probably got the most grey hairs its every had as colouring my hair along with shaving legs are not a priority anymore and probably not a good idea anyway. Eyebrows are thinning now so I think I’ll be sporting that baby seal look for summer that a lot of TSW people get.

Lymph nodes are huge. Interestingly, the places that itch most apart from red sleeves are the areas of skin around lymph nodes. This probably also fits with my blood results my white cell counts have increased a lot from pre TSW. All due to the amount of inflammation in the skin, thankfully other results and liver are all okay. Derm has increased dose of methotrexate to 15mg once a week although it may be a few months before I see any effect.

I took some full body pics this week in a bikini to try and show where the rashes go. Who knows? After TSW I may be able to wear a bikini with a tan rather than red sleeves and rashes!

red sleeves face and neck really obvious here. Tummy rashes quite obvious . You know your face is red when your lips are the palest thing on it

red sleeves face and neck really obvious here. Tummy rashes quite obvious . You know your face is red when your lips are the palest thing on it

back rashes

back rashes

My friend Jayne’s wedding was this week and sadly I wasn’t up to going. Jayne and Chris had an amazing day so congratulations guys! You both looked amazing and so happy in the photos. I did feel a bit more emotional as it emphasised all the lovely things in life you miss out on because of shitty TSW.

Ian is in Vegas on his ‘stag’ do this week even though the wedding probably won’t be happening for a few years once TSW is done. He really deserves a lads holiday with his friends and Im pleased they all went.

Positives …. Ears less oozy this week. Derm said my face looks a bit better ! Had one good day.

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2 weeks closer to healing….

So I have just completed my second week of topical steroid withdrawal, I am also 6 weeks into protopic withdrawal.

Temperature control was really annoying this week, ,my bottom half of my body freezing and shivering to the point where hips and legs ache, the top half warm and sweaty. This leads to the battle between duvet on.. duvet off… Duvet on .. duvet off….AARRGGHHH sod it, I’m getting in the bath. I found I am most comfortable to have bottom half in warm bath and open the bathroom window to have top half in the cold breeze. I have 2 baths a day.

Skin seems to follow the same pattern as last week although slightly worse. Sleep is not as good as last week way too much itching, and could not get temperature right. Skin then oozes and goes sticky/slimy and all the dead skin in the bed sticks to it and then I can’t sleep because I feel like a melted toffee that’s been dropped in the sand. In the morning your bed is filled with what looks like parmesan cheese and there is tonnes of it. It is hard to believe a human could shed so much skin. I feel that I will definitely have an obese population of house dust mites in my house. Then that blasted ooze smell goes up your nose so just in case you forgot, you also smell like a zombie too.

how my face feels when I first wake up. I have more crusts though.

how my face feels when I first wake up. I have more crusts though.

Red itchy rashes have spread cover most of body now it is less obvious when skin is dry. I am not itchy all day it comes and goes but once I give in it turns into scratch fest, ALL OVER! I think the 1st 10 months of tapering have benefitted at least in some way as these days my skin is quite resistant to it, the odd small scratch mark although in general my skin feels thick and ‘plastic like’ with the sandy flaky layer on top.

Hands have got steadily worse with my red sleeves having spread up the backs of my fingers too. Palms have also gone a bit sheddy too but that cleared in a few days. There is no way I would get my engagement ring on now.

red sleeve spreading up fingers

red sleeve spreading up fingers

rashes on my stomach

rashes on my stomach

That lump next to my thumb? lymph node ... yep they are HUGE

That lump next to my thumb? lymph node … yep they are HUGE. Wrist a bit pink elephant-y too.

Face is still a bit crap. Very very dry and tight in the morning.  Had some ‘lovely’ chin splits. One split went right across and made eating more difficult as it was like have a ‘second mouth’ and anything acidic or salty was really sore. Face sheds throughout the day and returns to red towards the evening. Eyelids swell up in the evening too and I’m a bit puffy around the bridge of my nose. I tried putting teabags on one evening but then forgot the next day and freaked out as my eyelids had gone dark brown and I thought they were rotting off or something. I still use jojoba oil to make my face feel more comfortable and stop it feeling this tight

Knees are generally irritating due to the elephant skin and sore skin on the back of the knees, top of feet sheds every day. Chest is joining the red party and is very irritating. Chest skin is very sensitive not sure why this is, I think im progressing into full body red. Oozing spots still the ears, neck, belly button, thighs, back of knees and red sleeves.

crrruuusssty

crrruuusssty

A good day right after a bath

A good day right after a bath. Eyes puffy

Managed to go see my horse last week on a dry sheddy day as I wasn’t shivering or oozing which was nice. I seem to get one better day a week which I am more comfortable and able do things and get out the house. Emotionally I have been a bit more down towards the end of the week. I just miss being comfortable as TSW never lets you forget it is there. I miss feeling nice there would be no point with make up or anything like that as you just can’t polish a turd

Ian’s parents visited at the weekend and it was lovely to see them. They are both really supportive, I’m so lucky to have a great family. It was a really sunny day and shorts and t shirt weather but I still felt a bit cold with pjs dressing gown and blanket on. Felt a bit jealous of Ian’s mum in shorts (great skin and pair of legs). Had a Chinese takeaway instead of the usual meal out as I’m more comfortable at home.

TSW had some media attention in the papers  hooray!. The daily mail covered Amy Lou and her battle with severe eczema and TSW. I thought I would give the oat baths a try after seeing how she did them on her blog.

So you get some tights (make sure they are not toe-less or have holes) put a few hand fulls in the tights and tie a knot and you have an ‘oaty bag’ throw it in the bath and Bob’s your uncle.. oat bath. I found I could get about 6 baths or so out of the 2 legs of tights. Although you come out smelling a bit flapjacky, I did feel more moisturised and less red. The oaty bag also doubles as a great stress relief ball as you can squeeze it to get the ‘milky’ oat juice out. After your bath breakfast is sorted too as you can just slit the bag get your spoon out and dig in… thank you porridge! Ok, kidding about eating the porridge, that would be sick. Especially as it has been floating in the ‘skin soup’ that is my bath ewwwwwwww.

Positives this week….. I realised don’t have cellulite anymore I think because the skin has thickened up. Although I look like crap cellulite or the lack of is still something a girl notices! Each week the striae (stretch marks ) on my thighs due to TS fade a little more yey!

1 week closer to healing

Hi everyone so this is my 5th week of protopic withdrawal and my 1st official week of topical steroid withdrawal.

I saw a different dermatologist on Tuesday. I started methotrexate and still having light therapy. He looked at my red sleeves and face and nodded. I told him about my symptoms and he said ‘yes, that does sound like addiction’ he said he had seen people like this before and that ‘no one should be on steroids for life’ HHHHOOOOOORRRRAAAAYY. If didn’t have crusty ooze ears I would have tried to hug him.

At the start of the week I got my braces off, so now my teeth look awesome. Hopefully one day skin will catch up. People say with a tan your teeth look whiter… well, let me tell you with a big red TSW face they look Simon Cowell white. TSW is like a tan…. but sh*t.

I am now off work on the sick and to be honest with how bad my symptoms are I don’t know how I kept it up for so long. It was really hard to concentrate on treating patients when you cannot control your body temperature, or trying to listen when all you can think about is the itch or the ooze you can feel forming on your arms.

It is weird going from 30 odd patients a day and riding my horse most days to being in the bath or on the sofa. I felt bad when the postman came round and I was in the house. I’m never in the house. I started thinking that he must think I’m one of those people who doesn’t work, lazy bones on the sofa with pjs on. I am also now sleeping in a separate bed to my fiancé, not his choice. I just didn’t want to wake him up itching or flipping the duvet on and off. The pile of skin in the morning too is just so gross and I don’t want to get skin all over him.

So how is my skin this week?

When I itch off the skin bark there is just ooze underneath.

So I get up, keep the sheet round my body so I don’t scratch at it or look at it and cry. Run the bath with Epsom salts and get in to wash the dried ooze cr#p off and layer of tight dry skin. Once I feel cleaner mentally it is easier to deal with. I watch a lot of Netflix in the bath and I have discovered ‘misfits’ and ‘American horror story.’

At the minute I am using jojoba oil on my face. I was using dermol200 at the start of the week but found it felt like I had someone following me round the house poking me with a pin in my worst oozy spots after I had applied it. I stopped moisturising and although I still felt like a human tree there was no stabbing pains. Today I tried a little shea butter on my arms and so far so good. I’m just trying to go with what is comfortable.

Best hours are during the day. Starting feeling tired around 3 ish and had a few cat naps through the week. Oozing starts around when Ian comes home from work. Not his fault lol just a coincidence. Itching coincides with oozing and a mental battle of….’ Its itchy’… ‘don’t itch’ … ‘it will ooze’… ‘okay maybe just a little itch’…’ and here’… ‘and here’… and oh ‘sh*t’… ‘Now look what you’ve done…’ and repeat. Worst spots are lower back, arms, neck, forehead, ears. That ooze smell is gross its like metal and something rotting, I don’t think anyone can ever forget it. On top of that I now keep getting BO, either that or someone has transplanted my armpit with a rotting mince and onion pie during the night. I never used to be a smelly person. You would think 2 baths a day and deodorant would help. I guess this shows  the rubbish trying to come out my skin. I am thankful that I’m sleeping well and eating well at this point. I will never know if tapering helped at all. However my skin is thicker and I probably would be down to bone right now it it hadn’t thickened up. Mentally I don’t think it helped as I have had most of the TSW symptoms for a while, so it is going to feel like I have been in this process for ages.

oooo  soooo old  yes really this is the knee of a 30 year old

oooo soooo old
yes really this is the knee of a 30 year old

my left wrist, oddly left hand worse than right too.

my left wrist, oddly left hand worse than right too.

Saw my usual derm yesterday, she still tries to have me admitted to hospital every week. I worry that they would sneak ts in those wraps. I said ‘At home I can get in the bath when I want, eat when I want and watch what I want on TV, I ll phone you if I’ m going to peg it’ The nurse laughed at least. Felt good on the drive home listening to some David Guetta tunes as it was the first time out the house for a few days.

I watched Nina Sloan’s videos on you tube and read Josh’s blog. All really positive stuff and they both look great now. I think there is a lot to be said  for getting back to life and exercise with respect to healing as Nina healed fast and was back to teaching zumba by month 6 which is awesome. Hopefully I ll be back to riding my horse and working sooner rather than later.

I managed to man up a bit this morning and took some photos before my bath.

face sheddy and flaky, lovely ooze patch on the chin.

face sheddy and flaky, lovely ooze patch on the chin.

groot's hand... no wait that's mine.

groot’s hand… no wait that’s mine.