3 weeks into tsw/mw

3 weeks into tsw/mw
this is the side/underneath of my boob, my thighs and my arm x

Friday, 21 October 2016

Just a little update again to say still healthy and still doing well ni creams needed still x

Sunday, 17 April 2016

Please sign


https://www.change.org/p/secretary-for-health-jeremy-hunt-u-k-dermatologist-recognise-and-treat-topical-steroid-addiction-red-skin-syndrome?recruiter=38926506

update part 2

It has been a very long time since I posted on here and it's been a whirlwind of a ride x I am now just over 2 years tsw and I have been healed for a good few months now, once I managed to get all the infections under control my skin just got better and better, after I came out of hospital that last time I completely changed my routine I started a daily protein shake, I got some fab advice of a lady in the tsw facebook group I have mentioned before and I started to use a mix of sudocrem mixed with vaseline n added tea tree oil, I applied this to my skin and put dry bandages over, I also used Viscopaste bandages while I was at work, these are zinc lined and kept me comfortable, I alternated between dead sea salts and himalayan bath salts or sometimes mixed the two I added tea tree oil to the dry salts before putting in the bath, and I never got infected again that is an amazing thing for me, my hair started growing back and I started to put weight on again, I ended up splitting up with my partner after tsw as it really did take a toll on our relationship, I found after having to rely on him so much during tsw that it changed the way I felt I just needed to get my independence and identity back, I also quit my job and began a new career as a care worker and am currently doing my nvq, so my life has changed alot, my ex and I are still good friends and I couldn't of got through all this without him having someone helping you really helps x anyway enough of the rambling I'm going to post my before and after pics on here for you all too see, healing does happen and I no longer use any creams at all and haven't for a while now x I sleep normal x hardly itch......yes that is the very last thing to go I'm afraid I think alot is habit as your doing it for so long it's hard to break x
 these are my recent skin pics as you can see it's clear, clear, clear
My hair has grown back from me shaving it all off and it's thicker x



Just a mix of how my skin was during tsw so you can see the comparison x 
I really hope that one day the derms and doctors will listen to our story's and stop using steroids for non life threatening things and the suffering will stop x

Monday, 23 March 2015

update part 1 hospital again and again

Well not long after my August post I ended up back in hospital I felt myself going downhill fast so went docs and was admitted straight to hospital where I spent another week on fluids and antibiotics for sepsis luckily not as bad as the First time,
Turns out it wasn't the immunos helping it was the steroid injection they had given me when I was first admitted with septic shock as the reason I went down hill so fast was a rebound from the kenalog leaving my system
After the fluids and antibiotics I felt better but my skin was back to red weepy and sore
I also developed a lump at the site of the kenalog  injection I mentioned it to my dermatologist who decided to request a scan
on the 21st September while still waiting for my scan appointment my lump started getting even bigger and very tender but it was my daughters birthday so I tried to ignore it later on that night I was in so much pain I rang the out of hours doctors and they asked me to go hospital to get it checked
The doc took one look at it and sent me to the surgical ward for assessment turns out the injection site had caused a massive abscess they kept me in and said I would have surgery to drain it the next day
The doc came round the next morning and said they want to try get my infection markers down before surgery so they were going to give me a double hit of iv antibiotics and move me to my own room about an hour after my iv antibiotics had been administered I was moved into my own room and started itching like a mad woman and my skin was turning purple so I buzzed for a nurse and she came in and called the doc he said to get me iv antihistamines and a hydrocortisone injection I said no steroids I rebound badly from them so they agreed to just antihistamines no sooner had these been hooked up I started to vomit the nurse got me a pan to be sick in and left at this point I was sat at the end of the bed with a pan in one hand and the buzzer luckily in my other hand as I started struggling to breath I pressed the buzzer again n the nurse came in I managed to say can't breath before it all went crazy I couldn't talk couldn't move just slumped over I remember being quite calm and thinking this is it I'm dying and it didn't panic me at all then I was thrown back on the bed which had been lowered into the crash position had oxygen up my nose and was hooked up to a heart monitor I heard the doc say get me that hydrocortisone my heart rate wouldn't stable it was up and down like a yo yo and I started shaking uncontrollably I wasn't getting enough oxygen so they changed me over to the big face mask and really pumped it up it took them a good while and a few more injections to stabilise me but eventually everything calmed down they decided to put off my operation for another day and took some bloods instead, but not long after the doc came round and said they had changed there mind I was going down for my op that day as my infection markers were sky high and there was a real chance of the abscess causing blood poisoning if it wasn't dealt with
So off I went down to theatre to be put asleep the surgery took a good few hours but at last the lump
was gone along with the pain. I was kept in and monitored closely as I developed mrsa so was still in my own room and was given my own toilet room to use I felt like a leper haha finally 9 days later I was allowed home but had to go docs everyday for the next week to have my dressing changed on my wound as they left it open to heal from the inside out they did a good job
Oh I also decided stop the immunos as once the kenalog was out my system it turned out they weren't keeping my skin under control at all

Monday, 4 August 2014

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

Saturday, 2 August 2014

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

Thursday, 31 July 2014

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