things that have actually helped the most

Through all of this I have had three things that have had a big impact in helping me
1. Immunos - cyclosporin not a good thing to be on especially long term and the side effects (skin cancers, liver damage, kidney damage) to name a few shouldn't be taken lightly its definitely a drug to weigh up the pros n cons off before you start but if you are severe and willing try anything id recommend,  you get checked regularly while on them, blood tests etc
They took about 6ish weeks to kick in properly I started on 125mg im now on 75mg and doing so good im going to 50mg

2. 50/50 emollient, I found moisturiser left my skin alot more tearable than the 50/50 did I also melted in in my baths on the days I couldnt have a bleach bath.
This emollient is the only one I have been able to use regularly I started off applying 2/3 times a day and i slathered it on now I use it every other day and only one application and a very thin layer

3. Bleach baths- fab to stop Infection,   half a cup of normal household unscented bleach in a full bath soak for 20 mins then rinse off,  I did this 3 times a week when I was at my worst I now do it once a week purely just as a precaution to stop any type of infection.  If its your child thats suffering I would say try the bath yourself first just so you can see ot doesn't burn or sting
I think the key to this is make sure you rinse off and apply the emollient as soon as you get out this stops any drying effect the bleach can have

sepsis

Ive decided do a lil note on sepsis - the top two pictures were taken in the hospital you can see how swollen my legs had gone I was sat in the hospital garden but had to prop my legs up
www.nhs.uk/conditions/Blood-poisoning/Pages/Introduction.aspx
Copy and paste the link to read up about it, of tsw is giving you the chills id recommend you taking your temp daily as if you begin to get a fever you wont realise
The week leading up to my hospital admission I noticed I went down hill rapidly with my skin, I was in work Wednesday feelin great, by friday I was bad so went docs and was given bath stuff n moisturiser-no vitals where checked,  I was worse sunday so had to phone in sick I thought the new cream had made me worse come monday I phoned docs again she said u dont need to come in ill give you some antihistamines and a week off work, Wednesday night I went bed and slept like I havent for months a deep deep sleep but wierd dreams my partner came home n woke me my bed sheet was covered on brown/yellow ooze I felt awful ive never felt like that in my life, rang docs and was told go straight there I would be seen as soon as I arrived I went in my pjs vitals checked my blood pressure was low, my temperature was very high and my heart beat was rapid, so the hospital was called n ambulance called for that was the beginning of a 13 day hospital stay on iv fluids, iv antibiotics,  anti clotting injections and a steroid injection, I was told I was very lucky the stage I was at a day or 2 later and I could of been beyond help
Here are some pics of how my skin went during that time

For more sepsis info please copy and paste this blog info, sepsis really isnt to be messed with

http://www.survivorsofsepsis.blogspot.ca/?m=1

progress pics

The above are In order oldest first left to right 

the face pics are left to right big pics then little

the bottom pics are recent

update

Well I spent 13 days in hospital all together because of the sepsis and needed a further 6 weeks off work then went back on reduced hrs for a week and just about manages but the sepsis has really wiped me out but luckily I had holidays booked so now im off for 2 weeks x
Ive been on the cyclo for a good few weeks now and my skin is wonderful cant believe it iveeven managed to reduce my dose I'm nearly 6 months in now and wondering if maybe this is it for me maybe my tsw journey is over im going try lower the cyclo again soon and see how I go

Im going to do a post in a sec of pics taken during my tsw journey

hospital

If you read my previous post about how awful I felt it will come as no suprise that I deteriorated very quickly, I woke up Thursday morning to find the sheet I was laying on was covered in browny/yellow ooze I got in the bath straight away but felt so ill, I got out n just sat in the bathroom not really able to move, I shouted dave n said I was in a really bad way I think I may need go a+e, I rang round to try get a lift there but then I decided I would ring the docs first c if I could get a home visit, they said a doc would ring me back while waiting for the call I decided call the derms office tell them I was bad anychance I could be seen they said no, the doc rang me back just after 9 I asked for a home visit he said we only do them for house bound patients so I told him I basically was I was in no fit state leave the house, he told me he could do one but not till the afternoon or if I could get there somehow they would see me straight away.
I decided try make it over to the docs as only a 5 min walk away so I donned on my coat over my onzie n put my trainers on dave had rang cal n he came n sat with the kids
Dave helpd me get the docs and I was seen 5 mins later the doc took one look at me and took my blood pressure temperature and pulse and told me he was ringing rhe the hospital to have me admitted then ringing for an ambulance as my temperature ws high blood pressure low and heart beat very fast
I waited in the surgerys side room and first response turned up and took my vitals again n checked me over then the ambulance arrived I was taken in a wheel chair to the ambulanceI was really worried I knew I was bad but didnt think I was that bad, I was taken from the ambulance to the a+e ward and given a bed the docs came over to try take blood n get a candula iv fitted but they couldn't find a vein lots of prodding and 3 docs later they decided to scan for a vein, they managed find one in my arm but it was very thin,
Bloods were taken and an iv put up with antibiotics and fluids they then came and give me an anti clotting needle in the stomach and a steroid injection in the leg,
I was suffering from a severe infection called sepsis and had endema (full body swelling)
I was told that even though I was very poorly I was also very lucky that I got there when I dis as they caught it before it had chance to do unrepearable damage my internal organs
I was then taken up to a propper ward and 10 days later I am still here haha Im off the fluids now and dont need an iv anymore, I also developed herpeticum while in and was put on antivirals which cleared it up fast,
Ive had a skin biopsy done but no results back as of yet, im now on antibiotic tablets, and recently been started on 125mg of cyclosporin as they stopped the azathioprine when I arrived I also take hydroxine and piriton antihistamines and still having the anti clotting injection, my vitals are checked regularly and mosst of the time are normal just an occasional change in blood pressure but my hate rate is still quite high n my feet quite swollen but other than that im doing well n hope to go home soon
I was surprised to find I had lost just over a stone in weight they weighed me here n I was 7st 6 I couldn't believe I had lost that much
I would urge anyone going thru tjis to go the docs if they are feeling bad not everything is just a side effect of tsw and I dread to think if id of listened to the ppl on the forums telling me it was just part of tsw, I could of ended up dead!

immunos n moisturiser

Well im in week 11/12 and my god im in the mother of all flairs im on week 1 of taking a low dose of azathioprine as its just got too much with the kids n work, I was using oilatum plus in the bath n epaderm moisturiser these worked well for nearly two weeks but just changed to dermol bath stuff and dermol moisturiser x ive just finished my second course of antibiotics for a staph infection
Im red raw all over and weeping like crazy especially my legs im back to see the derm in two weeks to hopefully up my dose of azathioprine and maybe I will start to see the benefit
I went docs again yesterday for sleeping pills as the lack of sleep is just awful lying in bed tossing turning and itching non stop is just hell haha
The weight loss is another thing im not liking I now weigh 8 stone and still not got much of an appetite I will b mentioning this when I go back as I don't want to lose anymore x

update x

Not posted in a few days so thought id update, I have been going through a mass shedding stage the amount of skin falling off me is ridiculous,  ive had my derm app thru its on monday I think im going to see about immunosuppressents as this really isnt anyway to live even if it is only for a while, you can still get flairs etc but ppl say they are less severe and that sounds good to me haha
My mood hit an all time low last week too felt really down and had a cry but luckily managed to perk myself up and get back to normal, I had to take a day off work Wednesday too as my skin was literally falling off my face, not a good look to have when working with food x heres some pic updates as you can see im still a mess but the plus side it I seem to get itch attacks then a break on and off now where as before the itch was constant

urgh face!

Well my face continues to be a pain in the arse its so flaky it looks a mess but it looks worse with moisturiser on! So prefer the flakes even though I look a state.
My first day back in work didn't go to well I lasted 3 hours as vomited and felt bloody awful think this was either the antibiotics or the fact that I had done jack crap most of the time I was off on hol so my body got a shock being up and out early!
I was freezing cold too despite the double layers and bodywarmer so ive finally given in and asked to be moved to a non chilled dept so I have 3 shifts left on the deli before I start my new dept yey count down has begun haha!
Got to go and pick my son up from school in a bit and this is the one place I hate going, work doesnt bother me much but walking into that school yard full of 'perfect put together mums' makes me feel hideous and I feel awful for ben that I have to look like this, hopefully by the time he goes seniors in a year an a bit I will look like me again as the senior school years are hard enough with out a mum that looks like an monster haha x hers a pic today of my face as you can see no change really :0(

flakes

Well today im well and truly flaking like crazy this is the second time since I started tsw early march so it looks like each cycle takes a month to do,so now im noticing the pattern I can keep track of it better and hopefully soon I will get one of the 'brakes' that everyone talks about fingers crossed.
This past week or so ive been the worst so far, no energy, looking bloody awful, feeling bloody awful and generally not wanting to do anything bar have a bath haha, today durable ng the flaky period im feeling slightly more energetic not much though but still a tiny bit of a change is better than none.
Back to work tomorrow :0( haha x

no change

At the moment one day just blends into the next with no change my skin goes red hot itchy and weepy then flakey and falls off then redhot and weepy can't wait for the break that people talk about. Hopefully I will get one soon
Im back in work in 3 days n really dont know how im going to manage it that's whats making me think about maybe asking about immunosuppresents when I get my derm app I know quite a few people use these successfully through tsw as the way I am now im no use to anyone and thats not a good way to be when you have a job and kids :0(
I hope the appointment comes through soon x

knees again

My knees are a total mess my god im readyfor this to be done with already ive got untill Wednesday for this flair to calm cos im back in work then :0(
Dunno what I will do if it doesn't x

red monster

Ive woke up this morning looking like a red scaly monster today think im having my secondflair before tthe first is even over the sleeping tablets of the docs were crap I took 3 in the end and still took me ages to fall asleep once sleep came though it was a deep sleep of about 6ish hrs so better than I have been getting but not what I expected to happen :0(
I seriously cannot wait for the day I get my first break it will be a joyous day haha as atm I just seem to be going from bad to worse

 

lesson learnt

Well I have learnt not to put a bloody thing on my skin, the salcura spray looked like it was doing my skin wonders so decided to put it on both arms the full length of them the stupid fool that I am.....well needless to say I scratched myself stupid all night and ended up with a trip to the docs this morning :0(
My docs app went well once I explained red skin syndrome she didn't even try to give me steroids yey! I left with a prescription for sleeping pills, antibiotics and some 50/50 cream and also a derm referral yey! I just hope the derm is as open minded as my doc was x
Dont think will be trying the 50/50 though moisturiser is not for me x

salcura trial

I recently sent off for a trial sample of salcura it came today in the post. Ive chosen to trial the spray on my wrist and the cream on my hand.  After doing mw for 6ish weeks I am sick of seeing my dead skin on everything but im not ready to try normal moisturiser again that's why this product especially the spray appeals to me as its completely natural and free from steroids, hormones,  cortisones, peroxides, , alcohol, parabens.
On initial application both areas stung for a few minutes.  Here are my before pics of areas so can compare after a few days (im using the spray on my ben wrist)

 

I didnt bother with the after pics as salcura wasnt for me I facebooked them to say I had literally ripped my skin off during the night as stupidly I covered my arms in the moisturiser they were very nice and sent me out a gentle version of the spray as it's such a small bottle and im head to toe mess I decided not to spot test it this time but to use is in the places I needed just once a day I did notice a very tiny slight improvement while doing  this I didnt rip mu skin off where applied - backs of knees and inner elbow the trail bottle has ran out now but I definitely think one application a day is the way to go with this I do have one more cream to trial though before I go out and buy a full sized bottle but so far this is the top of my list to buy.    The new one im trying is 

sooo tired

Today hasnt been a very good day, my face has flaired again its red rashy, hot and very itchy, ive spent most of today sleeping and I still feel tired! I just feel so useless I should be out enjoying the nicer weather were having with the kids not bloody sleeping the day away!!

update pics

Well not posted for a few days so thought id let ya know how I got on with my products, the deodorant still stings on application but it doesn't irritate after that so all is good there, the zinc paste has been really good in healing the cracks but its a vicious circle at the moment because no sooner does it heal and im back to scratching like mad again or in the case of my eyes rubbing them so they split again :0(
My knees are still continuing to get more stretch in them so thats good but im still very dry, red and quite itchy im cutting more now when scratching im thinking maybe because my skin is starting to produce its own oils again slowly which has to be a good thing doesnt it?
I just wish I could look into the future and see how long this will last, knowing when it would end would help alot haha but they suppose I should be glad that I know it will end sometime in the next 1-3 yrs at most :0)
Im going to the doctors on tuesday to try get some sleeping tablets and hopefully if I get an appointment and not a telephone consult I can run the whole tsw thing by them and see what they say as not alot seem to accept tsw which is crazy! Anyway will end here n post a few pics I took today of my skin

 

Here 

 is a before and after pic of my eyes using the zinc paste as you can see the splits look alot better

delivery day yey

Well today I had to parcels in the post, fitted through the letter box so no luna scaring the postie haha, it was the arrival of my zinc paste and my deodrant spray yey! So I had a warm shower and put my products on, the deodrant stung abit when sprayed but only for a second or two and I was quite suprised to find it has a nice light smell to it so far it has done the job but will comment again after a few days of use as ive not been very active today haha. Ive used the zinc paste on my eyelids, ear, nipples (very sore place at the mo cracked and weeping :0(   ) and under my boobs and so far so good I havent felt like scratching it off once! I will post pics in a few days too see if theres any progress (fingers crossed)
My knees feel alot more flexible today so im thinking my working environment has alot to do with drying them out more, I have a 2 weeks off work now YEY! So I will see how my skin is and how it goes once im back and may have to see about that change of department. Wouldnt mind it actually once you can do your job with ya eyes closed it becomes a bit tedious haha x
Heres pics of the zinc paste and the deo, also zinc paste makes a sun protection not a high factor but better than nothing and when mixed with coconut oil its slightly higher and goes on more easily so im told x

sore tight and fed up

My god how I got through my 13.5 hr shift today I will never know, I was walking round like I had pooped my pants because my knees were that tight, my thighs are dry cracked and raw  , my arms seem redder and my stomach is now flairing also my eyelids are a mess but I have some good supportive friends asking how I'm doing and it helps, also had one moron ask me can I not wear makeup to cover it, this I dont understand why would I put an irritant on my face just so I look more 'normal' to other people it makes you realise how hung up on looks and what people think of you some people can be, I wonder if they would still feel the same if they had to go through this, people are also very quick to tell you how rough/ill you look as if it isnt obvious enough without having it pointed out to you!! Anyway im off to bed to sleep (hopefully)  heres a pic of my eyelids before I go xx

 Also don't think I have shared a pic of my ear yet so here that Is too x

hello im here its meee

Today in work I had one collegue ask me whats up as I didnt look well.....no shit sherlock im a flaky mess but thanks for asking, then I had another tell me well I suppose if this doesnt work you could just go back to using the cream...I had to restrain myself from hitting her with the joint of ham I was holding (I just played it through in my head haha). Ive come to the conclusion people are either dense or just dont actually listen when you are talking, in the case of the 2nd colleague id go for dense!!!!

Anyway the point of this post was to tell you about the incident I had with a customer today, I served this woman with some cheese shes not been in for a while but I used to serve her alot she always likes to try different cheeses then buys a lil bit she is a really nice lady and we always have a chat about our fave cheese ( yes my life is interesting isnt it haha) anyway as I went to serve her she asks me where the girl was that used to do the monday lates very chatty and likes cheese, ive not seen her in a while.....I didn't know how to answer as she was on about me!!!! (Noone else works mon nights)  so I just said oh I dont know and shrugged it off I didnt want to make her feel awkward but I never actually realised I looked that much different with no make up and dry red skin, maybe I dont maybe it's just customers dont pay much attention when your talking to them either haha.

Skin update had a bad scratch session last night mainly my chest area was quite uncomfortable because of it today :0(     pic below x

more pics

Typical tsw red rash that stops at the wrist my poor tattoo has taken a battering scratch wise its a good job they go layers deep haha x have also done a bit more damage to my inner elbow,  I could really do with cutting my nails but think im still mentally scarred from the time during pregnancy the doc advised this and I did, my god I scratched till my finger tips were raw and sore with no relief so ended up taking the back cover off my fone and scratching with that haha needless to say I wore it down and broke it :0(

:0 (

Well my knees are agony and tight again today I feel like crying there that sore all my thighs are chapped too, think its working on a chilled department it seems to have sucked all the moisture out my skin im going have to start wearing some cotton leggings under my trousers I just hope this helps also maybe a dss bath before work was a bad idea hahaha oh well onwards and upwards positive thoughts an all that jazz as its back to work I go :0(



Well shift ended and I think I am actually seeing an improvement in my skins elasticity as although dry tight and sore they werent as tight as earlier in the week so def heading in the right direction still x

update an pics x

Well today the backs of my knees are feeling less tight which is a good thing but im noticing that when I scratch my skin seems to be tearing more easily now, I also have two more swollen lymph nodes on the back of my neck x ive managed find some natural spray deodrant on ebay so eagerly awaiting delivery of this I hope it doesnt sting.
I ordered some new tops the other day too as I need something long sleeved with a collar but soft and thin to cover me but still let my skin breath found 2 lovely blouses and they came today ordering online is a god send as it saves the hassle of having to try things on in the shops its too uncomfy and time consuming,  anyway my tops came this morning and the dog was by the door when the guy knocked they have a habbit of knocking once then dumping stuff Iin the recycle bins for me to find!!! so I opened the door quick before putting the dog away and my god I think the poor guy must have a dog phobia because he paled at the site of my poor luna prob cos shes a german shepard but she is a big softy she does bark at the door but only till she gets attention but I didnt even get time to say shes harmless he threw the package at my feet and scarpered I didnt even get to sign for delivery I felt so sorry for him but it made me laugh haha I know im a horrible person x anyway heres my pics for today there my inner elbow is the first pic and back of my knee the 2nd also my luna just so you can see shes not a monster haha and my blouses x

selfie face flair argh hate selfies haha x

 

Had a crap nights sleep even after taking 3 antihistamines and my face is really tight and sore today not too itchy thank god but around my mouth feels like it's on fire, just excuse the state of my mug I hate selfies but think I should post atleast one face pic haha x 

Ive just had a dss bath so hopefully will feel a bit better as the day goes on.

Also I made the decision today to not go on my works night out, its not for another 8 days but I think a night out in a crowded atmosphere will just make me itchy and uncomfortable and its just not worth it but I was really looking forward to watching dreamboys haha but there will always be another chance (hopefully haha) x im hoping im able to make it on a day trip to london ive got organised end of june as its more shopping/sightseeing I hopefully wont have to back out x fingers crossed x 

upto date now x

So now im upto date on the past 4 and a half weeks,  I had a bad night and scratched under my boob I could feel the strip of skin come off and it started to weep I had to really stop myself from carrying on I also really scratched my inner elbow till it got raw and sore but I think the mw is helping my skin toughen up abit, the back of my left ear is still weeping my hair keeps getting stuck in it hopefully when the zinc paste comes it will resolve this, my lips are very chapped and around my mouth is red, and my eye area is cracked and very dry I have a few cuts on my eyelids too. But id say my worse areas are my chest and my underarms these are tight, red itchy and very very sore it hurts to wear deodrant ive heard coconut oil is good as a deo but I dont want to put moisture there as I know it will worsen so I need to find a natural spray to use will post if I get a good one x

Under my boob, both thighs and crook of arm x

pics of my legs they dont seem as bad yet

The only place that has troubled me leg wise are the backs of my knees especially in work and my feet my actual legs although itchy are suprisingly not troublesome yet and I applied more steroids there than anywhere maybe its that last place to come out

more pics x

The redness spread to cover my whole upper body my legs so far havent been as red they are mainly dry, these pics are my chest my shoulder and my neck, if you look closly you can see my lymph node standing out on my neck its quite common for them to swell during tsw ive been told x