month 3 (June) update…… 3 months closer to healing!

Sorry it has been such a long time between updates but month 3 saw the start of some improvements.

Body hair – Ian said he could cope with the skin ( thank goodness), but he couldn’t cope with the body hair. Yes during tsw I stopped shaving everything because it was too sore. Poor Ian was engaged to Chewbacca. On a day I wasn’t as uncomfortable I decided to shave my legs. After I got through the layers and layers of hobbit hair I found……..Some normal skin! Yes, under the wookies’ winter leggings normal looking skin had appeared on my lower legs, They look a lot less grey/pink than they used too and are actually not dry , they actually felt kind of soft!! Who would have thought that underneath all the hair ( that was now probably clogging the drains instead) some improvements would happen !!  lots of leg touching  and showing off my calves to any one that would look ensued after ‘ the big shave’

smooooooth legs

The body temperature control issues seem to have settled this month and oozing almost gone. It has enabled me to do a lot more. I used to get one ‘better day a week’ now I get a lot more. I started being able to ride cheddock a few days a week, if I get a bit hot I still get itchy I try an cool down still on the horse as if I got off the itching fit would take over, pretty sure the yard probably has me on cctv scratching my back/ arse/ in the tack room. I’m soooo attractive. Sweating does make me crazy itchy but I think exercise is important to healing. ( yes, riding is a sport , no riders don’t just sit there lol ) With topical steroids you do not sweat like a normal person. The fact that my body is starting to sweat again must be a better sign. I feel better mentally after I have ridden too, TSW makes you feel stuck in some ways just waiting.. and waiting . With my horse I can work on improving things all the time so I feel as if I’m progressing at least in one part of my life. Horses don’t care  what you look like and thankfully people on the yard don’t either as they all know what is going on. A few of my fellow TSWers were talking about ‘rebounding’ which is a way of trying to encourage lymph fluid to move around the body (using a trampoline) Lymph doesn’t flow like blood, I hope as Ched is pretty bouncy he helps with getting my lymph fluid moving. I do feel a lot of the most itchy areas fit with areas of lymph nodes. With going off on the sick and being stuck in the house / bath for a few months I was not so ‘ goal orientated’ with my horse once I could get out again. I was just pleased to be around him what ever he did. He was often spooky pre TSW. Once my attitude had changed so did he, he became more reliable and was doing things with ease that I used to find difficult.

Feet and ankles are still my worst areas and shed like crazy. It is my hands holding me back from going to work again as they are not strong enough and full of cuts. Ian bought a PS4 and a few games to occupy me a bit in the hope I scratch less. I started playing ‘The Witcher’, a massive game that will take ages. It definitely helped with the boredom. Have to say though the creepy crones are definitely my hand twins.

my hand twin

knuckles

wrist

Adverts about skin products are pretty annoying too, the one with the ‘in shower’ moisturiser. Really?! It must be so hard to have to spend 1 minute after the shower moisturising your nice normal skin that people really need to do it ‘IN’ the shower?! Im going to have sooooo much time once I don’t spend most of the day worrying and taking care of my battered covering I call a ‘skin’. Hopefully I ll be dancing around out of the door in silky clothes one day ‘loving the skin I’m in’ until then adverts like this are going to annoy me.

Face moisturiser advert was by far the best ( sarcasm alert! ) ‘because impressing the woman in the mirror is the most important thing’ Pretty sure even non TSW people have other more important shit to worry about in life. The woman in my mirror ran away screaming like 3 months ago and put a bag on her head.

Venus razors advert ‘wow’ this one really struck a chord with me – ‘because beautiful, smooth skin goes with everything.’ FFs Venus guess I should just bin all my nice clothes for the next 2- 4 years then. Guess that means I should only wear a haz mat suit for casual days then, thanks Venus. Brrrrilllliant, guess nothing goes with my skin, awesome!

what Venus thinks I should wear, because minging skin doesn’t go with anything apparently

Went for a nice walk round Alnwick gardens and managed to embarrass my friends a bit, it turned really cold so ended up looking like a wierdo wearing the picnic blanket. Apparently picnic blankets, bandages and hair bands will not become a fashion staple, but hell, I’ll take comfort over style any time these days.

I watched the eventing in my first month of withdrawal under a duvet shivering and itching thinking it would be a long long time before I could spend a day out like that walking around. I was so happy I managed to go to Bramham horse trials with friends only 2 months later in my month 3 tsw. I was so pleased my skin let me have a day like that walking the cross country course all day, and so pleased the weather was good as if I got rained on that would have been crazy itch.

face still rashy at beginning on month

face at end of month, much better

I think moisturiser withdrawal is starting to pay off a bit. For the first time in years the middle of my back, and lower legs do not feel dry after a bath. Really hoping this continues and other parts of me catch up. I still use a bit of jojoba oil or almond oil on my face and hands for mobility. Moisturiser withdrawal is easier on body as you can put clothes on and forget about it. Not as easy on face and hands as they are on show and move a lot more.

It has been a bit more sunny in the north east so I decided to try get a bit of sun for an hour or so, skin seemed to cope well unlike the few months previous to tsw and the crap way my skin behaved with light therapy before I started TSW. In the later stages of TSW sun is meant to help with healing, I think when I was severely erythrodermic pre TSW that was definitely not the time to try.

Bras- throughout TSW I haven’t been wearing bras, I’m flat chested enough to get away with it. I cant imagine how  difficult TSW must be for well endowed women, i After some peer pressure from my horsey friends I decided to go and get some really attractive sports bras, as I was told if I don’t, I will end up with spaniels’ ears /fail the pencil test and have empty socks for tits when I’m older. Changing rooms during TSW are pretty scary. There is a mirror in there obviously, and the worry that you  will leave some skin behind when you take your clothes off…. But.. it was fine and I actually looked at my back for the first time and month and realised it looks pretty freaking normal !!

Positives for this month…. Definitely feeling better and more positive…. Lower legs feeling good…. Managed to do some serious hair removal and was ok…… back almost feeling normal…didn’t leave a pile of skin in a changing room….. riding horsey more too.

2 ½ months closer to healing

Things can really change in two weeks! The oozing face has pretty much stopped woo hoo !

what my chin splits look like

Face became a much more normal colour, and I started to look a bit more like I’d been rushing about or caught the sun. Face goes itchy once or twice a day with that dreaded crawly sensation but it is otherwise okay, sometimes it looks a normal colour, sometimes a bit rashy, sometimes red. Skin feels tight and a weird texture and then sheds for a day then is better the next day before the cycle starts again. My face looks redder if I sit in the house all day, if I get out it looks a lot better.

 

vs. what my chin splits ‘feel’ like (although I do have better teeth than the mouth of Sauron)

My chin developed loads of tiny little paper cuts which try and close up and then split open when eating/talking which is pretty unpleasant, lips also have quite a few splits in too.

Red sleeves have gone! ( for now), bet they will be back though, I sometimes feel a bit hot but the burning sensation has gone for now too. I now look more like I have severe full body eczema.

what is that strange ooze smell? how can you not notice that Cheddock?

Since ooze reduced I have been able to get out more and see friends and see my horse. There is something relaxing about being with Cheddock, on the days I manage to ride I am much happier, I wear a silk balaclava under my hat and keep my hands and arms bandaged up. He is doing awesome at the moment. Horses are so sensitive and notice any unusual smells. I really think horses notice when we are ‘sick’. I probably always smelled of TSW to some degree so Ched doesn’t notice any difference, If I go near anyone else’s horse they really sniff at my bandaged hands and round my neck (the bits that flare quite a bit) it is really strange. To a human nose the ooze smell has almost gone from upstairs which must mean I am healing a bit or the methotrexate is actually starting to help ( when I am not barfing it up into a pan).

I have managed for the first time since starting TSW to get up and not bath straightaway! This will not sound like an achievement to most people but it is definitely some progress as It means I don’t have to peel my eyes apart in the morning or wash off sticky ooze. I also managed to go out to a pub for some food, having resigned myself initially to want to hide in a hole and hibernate until I am healed, I am amazed that my skin on my face allowed me a day I could go out in public without feeling really self-conscious.

I managed to go to the cinema! got a little itchy but not to bad, unfortunately ended up at behind a bloke with the worst BO ever! and I thought ooze was bad. If you are reading this Mr.Smelly pits, marvel avengers would have been better without your  personal eau de parfum.

Since starting to taper down and starting TSW my body seems to crave food and need masses of calories, my portion sizes have gone up and I think I put away more calories a day than Ian per day but still lose weight. I guess a lot of energy is needed to make new skin every day. Although TSW is awful it is amazing to see what the body does. I am still on turmeric with either almond milk or coconut milk and trying to eat well, I am still on aloe vera drink but switched to the cranberry and it tastes nice, a lot less like urine than the plain one. ( not that I am a wee drinker…. but if someone said it would cure my skin… hell, I would give it a go!)

belly on a good day , a lot redder in real life, weird lines

There are no more shivers! Yey! the shivers have stopped which is great, but TSW has swung the other way now and I sweat like crazy, just like water really but it really sets off the itch and  it tends to be my belly. It is weird as when you are on ts you don’t really sweat properly like a normal person, having been on ts all my life I could be really sweaty lady and not even know it! I am still bathing once a day normally. My belly can go from bright red, to normal coloured to red stripes all in one day. The red stripes are weird. It makes my belly look like a ham joint with the string on.

My worst areas are still my hands and ankles at the moment,  ankles are the guilty -itchy spot as it feels good to itch but then you feel awful when you see the damage you have done. I still have my arms bandaged and cotton gloves on, and these are going to be the trouble spots I think. It is hands and arms that are holding me back from getting back to work. Scabby fingers crossed for more improvements.

The good news is my hair loss has reduced, the texture has changed from dead and wire-like, to soft and fluffy. The new growth around the front seems to stick up vertical and makes me look very eccentric or like I’m holding a van der Graff generator so I tend to wear hair bands.

arghhh a crazy person! no wait, just my TSW hair

hair band on…. and look how normal-ish my face looks

Now for the update on my favourite part of the month…. the derm visit. So I have been downgraded from severely erythrodermic to severe eczema.  Although I was assured ( again) that if I allowed myself to admitted to hospital and wrapped in super potent steroids it would all be gone in a week, HELL NOOOOOOOOOO. You  know you are in TSW when you are more confident about the prognosis for your skin than your doctor is. My derm wants to refer me on, I would rather she saw the whole process from start to finish, I have hope than when my skin heals I might convince her that there is something to this TSW thing, and in doing so help other patients in the future. Slowly slowly catchy monkey, Oh, and I love being right even if it takes a few years.

Positives….. ooze stopped!…. face looks more normal yey!… hair stopped falling out.. more good days to see friends and my horse.

I am a bit behind updates and I am now in month 3 more positives to come hopefully

2 months closer to healing……

 

The start of month 2 was quite difficult with the ooze. My face was particularly bad. Swelling had reduced, but my upper lip, chin and jaw line drove me bonkers. The crawling sensation would not let up on the jaw line until it was rubbed (took a lot of self-control to not use nails)

The night is certainly full of terrors when you have TSW

For a few days this was terrible at night. Night time is not something you look forward to in TSW it brings on anxiety as itching and oozing get worse. One night in my half asleep state I rubbed at my jaw and chin and cheeks, all of a sudden it was like someone had painted my face with what felt like wall paper paste, it caused a bit of a panic as in the dark I imagined my face had finally fallen off.

lovely patch of face ooze, good job this laptop does not have ‘scratch and sniff’ it is a smell you cannot forget

No, it was just ooze…… mmmm nice. It had dried into a layer of crust by morning after I peeled myself from the pillow. I tried viscopaste wraps on my face after some tips from my fellow red skinners (thanks ladies). They can be left for a day under bandages on other body parts but a maximum of 90 mins on the face. This did help to dry up the ooze. The temptation to rub or pick at the crusty bits is overwhelming but if you give in fresh ooze would appear. Ian got some scented plug-ins for upstairs to reduce the dreaded ooze smell, I must say it helped a bit.

dry dry itchy dry

Screw you TSW

Inspired by ‘orange is the new black’…. Sanitary towels have more than one use! I found the sanitary towel method really helped. I ended up wrapping a bandage around my head with a sanitary towel stuck to the inside of the bandage so that the towel would rest against my cheeks, chin and jaw. This soaked up any ooze and discouraged sleep-itching of that area a bit, mentally I felt better and slept better knowing it would be soaked up and I wouldn’t have to peel myself of the pillow.

The dreaded red sleeves reduced to pink from red but remained crazy itchy, feet and hands are still pretty bad at this point, I use viscopaste wraps or sudocream. I bought some cotton gloves to rock the mime look. I find I don’t itch as much with the gloves on as they are covered, I don’t feel as self-conscious out and about with gloves on although people probably wonder why you have gloves on in summer. It is better than when I went to the shops without sporting my marcel Marceau/ Micheal Jackson look, people try and pass you your change in a really awkward way to avoid touching hands. It makes me feel like someone with grey-scale in game of thrones, princess Shireen, I sympathise.

I got a bad cold at one point which meant the sodding asthma came back, I really hope it disappears again soon. A cold is a pain in the arse when your upper lip is always crusty with little cuts and oozing, as our noses are a hive for staph bacteria, it was probably this that led to me needing antibiotics after my derm did a swab and it came back as staph. I am trying out colloidal silver to try and prevent it happening again. Just don’t want to turn into this smurf guy so I only using it sparingly when oozing.

yep, blue isn’t much better than red but I think he was eating colloidal silver and practically bathing in it.

The course of antibiotics led to me missing 1 weeks methotrexate dose, I missed a second as I threw up a few hours after taking the dose. Who do you ring when you are fainting on the floor and throwing up in a pan ? yes, your mum, even when she lives in France. Apart from the pan-barf incident otherwise the methotrexate has been okay, just wish it would hurry up and do something.

Most of the time I manage to stay strong about the tsw thing, but some days it gets to me more than others. Apparently the sound of my crying is the worst thing for Ian as there is nothing he can do or anyone can do to help me. If I think how long this could potentially take (at least 3 + years possibly), living this half- life, it breaks me. Emotionally it is hard, you feel stuck and like you are missing out on so much.

I had a really bad morning where the itch just wouldn’t stop it drove me to tears, my friend came round even though I just wanted to crawl into a hole and scratch myself into oblivion, she took me out for a walk, the itch stopped, the redness reduced on my face so much! I feel so much better if I get out and about. TSW has also made me realise how many lovely cool friends I really have.

elephant skin….so wierd

Positives this month …… red sleeves more pink than red

6 weeks closer to healing……..

Well TSW is a rollercoaster… face got better and literally a day or two later and it was back to crap. Hair still coming out, feet still awful, red sleeves red again, lymph nodes still eggs. Rashes on whole body only tip of nose is normal skin. Yoda eyelids back again. Oozy areas between fingers, inner thighs, back of knees.

My eyelid twin, May the 4th be with you

Crazy itching on jaw line and neck and cheeks. Interesting that it totally fits with where the lymph nodes are on head and neck as the awful itchy bits. It feels like something crawling under the skin or that you are being stabbed with pins until you cannot keep your hands off it. (A bit like that scene in the mummy film with the scarab running around under the guys skin, yep my face feels like that, and some people say don’t scratch, ha)  Even just rubbing it causes it to ooze then form lovely scabby crusts. It did at one point look like I’d been in a fight and dragged across some gravel. Face must be the worst place to have tsw as you cannot hide it, I really hope it is the first place to clear. I hardly sleep when cheeks are oozing/itching as I normally sleep on my side which results in my face sticking to the pillow and setting of the ooze again.

I found a nice smooth bit of skin on my bum. One bit. That is all I get. Sigh. Why can’t that smooth bit be on my sodding face?! I considered wearing ass –less chaps just to show it off (kidding)

If everyone had bums for faces at least my smooth bit of skin would be on show

Nipples are crusting and one looks like it might drop off. Really thought this was due to not wearing a bra, like joggers nipple, then I remembered my lifestyle is mostly sedentary now, and I do not jog. It is also a TSW thing, I can say for sure I never put the evil cream on my nips!

Still sticking with moisturiser withdrawal on body, jojoba on my face. Been working on having the healthiest diet I can to try and support my body as best I can. Eating lots of fruit (as one massive fruit salad daily) veggies, nuts and seeds. I take turmeric each day and aloe vera. I take a hair and nail supplement and evening primrose oil.

I shed about a cup of skin a day, although one night the ‘big shed’ happened. My whole body literally looked like a dehydrated cracked desert then so much skin was coming off I felt furry. Absolutely horrendous and amazing at the same time. Hoped I would get a little break after this… but no luck, cycle of red, itching, oozing just started again.

what I wake up to every day

yoda eyelids and very crusty face

I have been on methotrexate for 6 weeks now so I can try and reduce my symptoms to get back to work, dosage was increased to 20 mg this week. I haven’t seen much difference yet so hoping it may kick in soon. Unfortunately after taking Wednesday’s dosage I did not feel good. Went grey and pale (not itchy and red for once ) but then pretty much fainted, ears were ringing too, laid out on floor for a while, speaking to my mum helped as I was freaking out a bit. Came round but then threw up. I rang the hospital and they said to just take next dose next week. So rubbish that I have to resort to taking these horrible medications due to a side effect from a stupid cream.

I always wondered whether the drug companies knew about TSA, well this week I found out that they definitely do. A friend told me she used to work for one of the companies. Staff are trained and provided with personal protective equipment to wear when ‘handling’ topical steroid creams to avoid ‘steroid addiction and subsequent withdrawal’ So why then are doctors not told this by the drug companies? Why are patients not told how dangerous these creams really are? Why are caregivers/parents not given protective gloves to protect themselves too?

Because…. ADDICTION PAYS

They get round this by instructions on the insert that say ‘do not use for more than 2 weeks…. Unless prescribed by a doctor’ But…. The doctors don’t know about the addiction and withdrawal, so creams are prescribed and prescribed in increasing potencies. I do believe doctors care about their patients and would be horrified to think that topical steroids can ruin people’s lives. Unfortunately until TSA is in the NICE guidelines and doctors are trained how to recognise and help people go through this horrible process it will happen again and again. It is totally avoidable.

Every week I realise that sooo many people I know use these creams. If you do, and have for a while and think you have TSA, I am sorry. This is hell. I would not wish it on anyone. Actually, no, I would wish it on the top dogs in the steroid drug companies, they could at least itch and ooze on their bed on money.

If you use ts but do not have ‘addiction’ please be careful, not enough is known as to why some people get this and others don’t. It is probably cumulative, you don’t know which application will tip the balance into addiction, and it may be genetic as to who is more at risk, again how do you know for sure? I think in society we are too quick to treat a tiny rash which would probably go on its own, too ‘keen to put something on it,’ To those lucky enough to have never needed to use topical steroids, would you want to now knowing this?

One thing I know for sure I will never ever let this crap touch my skin again. Rant over.

Positives this week….. er… one smooth bit of skin on my arse… that’s seriously about it… and on the bright side it could be a lot worse.

1 month closer to healing……

Yey I have finished my first month!! I don’t think I have gone this long without topical steroids in my life.

So this week I have only had a tiny bit of ooze on jaw line. Neck is a little rashy but manageable. Feet still scabby and sheddy. Lymph nodes still huge. Itch comes in intense waves, crazy itchy all over then ok for an hour or two. Temperature control still off but weird chill sweats have reduced. Red sleeves are more of a ‘pink’ this week which is good. I have been told face looks better, it is certainly itchier and very sheddy but more pink than red.Eye lids do still swell up on a night time and I feel like yoda when I wake up in the morning as they are more like tri-lids than eyelids.

hair monster

elephant knees.

.

Hair loss has increased again I hate washing it as I feel a bit down when I realise how much has come out. Skin is crazy thick I can scratch and scratch my body and I’m not full of holes. There is elephant skin on my elbows, knees, ankles and hands. Ian thinks skin looks a bit better but ‘it just needs to realise you aren’t as big as it thinks you are as you don’t need so much.’ Good way of looking at elephant skin. Skin is shedding massively I have to vacuum my bed and bedroom every day. My skin on my legs and feet still has that weird purple- grey colour I really hope one day that will go away too.

crazy thick skin

arm less red!

Interestingly I have had asthma all my life. I have used salbutamol and becotide since childhood but eczema and topical steroids came first. I needed inhalers for exercise or if my asthma was triggered by dust, damp or illness. I often used my salbutamol daily. I started using my steroid inhaler less and less 10 months ago and then stopped it completely, my asthma symptoms seemed to be the best they had ever been once I stopped elocon cream. I cannot remember the last time I used by salbutamol inhaler it must be at least months, the longest I have ever gone without it. I wonder if I will even have asthma by the time I am through withdrawal and maybe it was all steroid addiction for me, after all there is a saying ‘the lungs are the skin inside out’.

For comfort I am still using Epsom salt baths or oat baths. I tried apple cider vinegar on the face when it was particularly red but it is hard to dab something on when you know it is going to sting. I found it easier to do in the bath next to the open window to get a breeze on my face to take away the sting, it seemed to hurt less the more swear words that came out of my mouth, let’s hope the neighbours weren’t in their garden. On the face I have started using Egyptian magic cream, and jojoba oil on

hands for mobility. On the rest of my body I am trying moisturiser Withdrawal. My body seems to be more comfortable without moisturiser at the moment, less itching and burning, also on the upside there is less clumps of greasy skin under my nails.

Normal healthy skin produces its own oils naturally. Topical steroids ruin the barrier function of skin so this ability seems to be lost. Moisturisers artificially create the feeling of moisturised skin, but in doing so the skin is less inclined to try and produce its own oils. Moisturiser withdrawal is to help the skin recover its ability work as normal skin. A better explanation is on this link http://mototsugufukaya.blogspot.jp/2013/06/is-moisturizing-really-help-to-cure.html

Dr Fukaya also has a book which gives lots of information on TSA and theories into why this happens. The link is here and definitely worth a read (especially for any of my friends in medicine who may see patients on ts)

http://topicalsteroidaddiction.weebly.com/contents.html

Dr Fukaya also recommends getting your eyes checked, I went for my eye test this week. The optician was lovely and very thorough. I am lucky I do not have any of the complications as below:

http://mototsugufukaya.blogspot.jp/search/label/ophthalmological%20complications

However I was experiencing a bit of foggy vision, this turned out to be due to a reduced tear film, normal is about 12 seconds before it breaks up, mine was 2 seconds, there was some damage to my cornea epithelium in my right eye for this reason. As recommended I am using gel eye drops for bed, today my eyes feel a bit better. I think this fits with the whole dry skin, dry hair thing too, which I’m hoping resolves with TSA

It was ground hog day back at the derm who still thinks I have ‘eczema’ this week. Every week without fail I get asked about moisturisers, every week I say’ no, as they make me more uncomfortable’. Then the conversation came back round to do I want to come to hospital, and again I say ‘no’. Then,’ do you want some protopic for the face’, I said ‘no’ and then, ‘do you want some topical steroids???!!!??’ wtf ?? After having been at least 10 times and I have said NO every time? Still trying to give out the skin heroin eh !!? Still flogging that dead horse, eh ??!! I said’ No’, again, ‘that ship has sailed’ Jees, surely insanity is trying the same thing again and again and expecting a different result. I really hope one day TSA is recognised, and that it is looked back on in history and compared to the days when they used to prescribe smoking cigarettes for everything.

Positives this week…. Still no asthma (yey), less ooze, some better days this week, I was reassured I don’t have any hideous eye problems so when I go back to work I’ll still be able to see which tooth I’m meant to be drilling which is always a good thing!

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!

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.

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

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.

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.

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 1^st 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

rashes on my stomach

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

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 5^th week of protopic withdrawal and my 1^st 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?

Well..I’m not this cool but I do feel like I’m covered in a layer of bark

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

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.

groot’s hand… no wait that’s mine.

Tapering- May 2014 to March 2015

Warning.. Gross skin pics to follow

I stopped Elocon (potent) and dropped down to Eumovate (moderate) the dermatologist advised using protopic (immunosuppressant cream, not steroid but just as nasty) twice weekly to prevent flare ups. I was covered in full body burning rashes. I couldn’t moisturise as they burned and made me itch more. I was crazy itchy… like something crawling under your skin. The only relief was the shower. I started using protopic on my forehead as I was getting rashes here too now.

These pictures are from the months I tapered down.

when I first found out about TSA, 8 days after applying elocon

tapering rashes. So unlike eczema

getting redder for christmas

I was starting to struggle at work and the horse. My body would burn and I would just think about getting home and in the shower.

I managed this way thinking I could just ‘pop’ elocon on again for the wedding and honeymoon.

My social life dwindled as I found I wanted to do less and couldn’t do some of the things I used to do. I lost 1/3 of my hair, my lymph nodes were huge. I couldn’t control my body temperature. I would shiver then sweat and sometimes do both at the same time.

Covered in rashes I went to see my dress. The beautiful gown I had saved up for. I cried the whole time.

I saw a different derm and begged for help to clear me up for my wedding, she was a bit shocked by the state of my skin, and diagnosed me with severe extensive eczema. Not all doctors and especially not all dermatologists recognise TSW. I started light therapy. I tried 1 course of prednisone. It worked for 6 days, by day 7 it had spread to my face. The rebound after it was like being lit on fire. I stopped protopic for the light therapy and my face looked like sh*t. Sooo ready to be a bride (not)

We went to Amsterdam for Ian’s mum’s birthday. Beautiful city, got to love the Dutch, lovely people, and no, I didn’t see goldmember although I could relate to his problem with skin flakes.

Although my skin troubles had been discussed it was different for the family to see it. I was not the same person. I looked at the floor rather than at people, ashamed of my face and swollen eyes. I used to be the first one up to dance now I was the one first to bed. I hated hotel beds embarrassed by the ooze blood and skin on the nice white sheets. I hated travelling and felt like people were staring at my skin or wondering if my scratching was contagious.

my nose shows my normal colour

red sleeve on face

red sleeves, clear palms

zombie foot… nope its mine

elephant hand

Together with our families, we made the decision to postpone the wedding for a few years, the rebound was too strong, I couldn’t be fixed for the wedding. I was dreading it due to my skin rather than looking forward to it. I was becoming depressed.

I have been amazed at the support from my family, friends and work colleagues. With the wedding cancelled for now. I have stopped working, started methotrexate, and started cold turkey withdrawal. I am terrified of bad this thing could get, as a long term user of potent stuff I’m fairly sure this is going to be hell. Probably will try some full body pics if you guys can stomach them for  when I get my ‘hell boy on’ for cold turkey withdrawal

Why ‘Buffalo Alex’?

Since my skin is now a grey, leathery, scabby covering for my body that doesn’t really resemble skin. I can’t help feeling jealous of well, everyone. They don’t even realise how amazing it is to be able to sit there comfortably. Not itching. Not oozing. Not shedding. Not burning.

I was looking at Ian’s skin. How it is all one colour, skin coloured and smooth, soft and supple, he doesn’t even moisturise or do anything with it! Yet there it is doing what it should…keeping his insides in and the outsides out. I told him how amazing it was. He joked I was sounding like Silence of the lambs.

Ian said ‘get off Buffalo Bill, I’m worried you might go crazy from this and try and wear my skin.’

‘Say are you about a size 14?’

‘It puts the lotion on the skin’

Ha great I sound like a serial killer.

There is the truth of it guys… skin shouldn’t need anything. One day I hope to have a new skin without having to ‘Buffalo Bill’ anyone else.