2 ½ months closer to healing

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

chin

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.

 

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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.

horse

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!)

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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.

crazy hair

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

hairband

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)

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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

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

dry dry itchy dry

Screw you TSW

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 bathing in it.

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

elephant skin….so wierd

Positives this month …… red sleeves more pink than red