Day 865

2 years, 4 Months and 14 days in!

I’m back!!! Again I’m so sorry about not updating for such a long time. The periods between my posts have been longer because there’s not that much to update really. Also I have been a busy busy little bee. I’m back at uni and set to graduate this year. I can’t wait to finally get my stupid piece of overpriced paper !! 😄

Tis winter here now and the winds have been really nasty. I am coping as best I can. I had a pretty bad flare in Jan. And that was right around the 2 year mark for me. I thought for sure I was gonna escape the anniversary flare but no. It totally knocked me out of any plans for about 2 weeks. I bounced back pretty quickly though. I’m sorry I didn’t take as many photos. But I’ll post what I have plus the updated photos.

I’d have to say overall the degree of flares has died down. I now have this kind of itchy (still crazy flaking) flare. It’s like dry skin that just constantly sheds now. Like I cycle between a dry cracked day, to a flaking shedding day to a lobster red skin day. Rinse and repeat. No more ooze for me tho! Except a few tiny patches here and there. Also sometimes random eyebrow hairs fall out but really I can deal.

Okay. Ready for photos?? Here we go!

So my arms have had these flares for a LONG time. And they flared up in Jan. Pretty shitty but now they are so good I don’t have to bandage it at all!! Just dry and flaky and a bit spotty now.

Left Outer Arm 

Jan

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July

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I know. What kind of Deadpool-esque quack healing factor is this? I don’t understand but it is great and I am not complaining.

Left Inner Arm 

Jan

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July

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Right Outer Arm

Jan

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July

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Un-freaking-believable

Right Inner Arm

Jan

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July

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Left Leg

Jan

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July

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Right Leg Top

Jan

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July

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Right Leg Side

December

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July

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Random Thigh

Jan

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July

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Face

I’m so sorry but I didn’t take any.. I don’t remember why I think I was just devastated because the anniversary flare hit me hard and the whole bottom half of my face was oozing and red and really horrible. But I am better now.. although this is me on a bad day these days.

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And this is me on a good day!

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Was so great to catch up with Esther again (You all read her blog too right??). She is a ton of fun! We are both doing soo much better. Thank god considering we have both passed the 2 year mark already. I wish I could have spent more time with her but between my uni/exams and her jetsetting around the world, we ran out of time. Ah well. There is always next time!

Oh and this is me on a really good day. Just some makeup, no filters. 😉 (That’s my sister btw… Can you believe she is turning 40 this year?? Those asian genes are handy)

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Yeah. Life is getting better.

Currently still no moisturisers which I find still itches me. I do shampoo/conditioner though. I find unless I do it makes my scalp really itchy! I am very particular about what makeup I use, super sensitive skin is a nightmare. But my main go to is Estee Lauder, Clinique and MAC. It’s pricey but worth it for my skin to not react.

Also I do have alcohol sometimes (Like 1-2 drinks a week) and I generally eat well. The only thing I cut out and definitely will never consume again is coca cola. I find one tiny sip and I will break out. So really I cut out a lot of sugary foods (ESPECIALLY the processed stuff – it makes me itchy as hell). But sometimes I am naughty and cannot resist junk food. It is too yummy and I am weak.

I hope everyone else is doing well and keeping their spirits up. Persevere my dears! Much love, till next time xx

 

Day 455

1 year, 3 months and 1 day in!

Hello all! Yes I am still alive and no I have not given up on my blog! 🙂 I deliberately left a long gap between updates this time for a good reason. I had that dreaded anniversary flare!! I’m still going through it but I amassed a set of time lapse photos to see how the flare progressed. I have to say this one is pretty nasty and it is not a pretty sight. I was feeling so shitty I really wasn’t in the mood to take photos but I did it anyway. I knew I would regret it if I didn’t. SIGHHH

This time around I did try a few new things. The bentonite clay was one of them. I experienced really heavy ooze this time around and I thought it would help but it really didn’t do much for me. I am thinking I will try the domeboro next. One thing I did learn was that I had to be careful what I used to mop up the ooze! Tissues were a big no for me they made it SO much worse!!! I actually found paper towels were a better solution.

Anyway I’ll let the photos do the telling..

My arm had this crazy ass flare that was so annoying. This was probably taken like 2 months ago. It was crazy weeping and it took a long time for it to scab over like this. I really had a lot of trouble with it. It was incredibly itchy!

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This is my arm now. It has kinda started to clear up and is a lot more manageable.

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My other arm is not doing too bad but the wrist has this bad patch. I have to be so careful otherwise it will split and bleed but at least it is my left arm.

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My legs haven’t changed much since going through the flare. Still slowly recovering.

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That itchy flaky skin extends a little past my ankle.

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My belly too…

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Okay now for the scary photos… are you ready? Haha This was the beginning of the flare. That nasty cut was so sore and then the skin started to weep a little…

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Then this happened…

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I don’t think there is anything that could have prepared me for it. It was constant pain and bleeding and weeping. I would actually wake up and have dried ooze everywhere on my face and in my ear. My neck had a massive split in it that made moving painful. Holy shit I really hope this is my last major flare. This round really tested my mental strength. After a year of this I feel more worn down than I ever did.

These are more recent photos. While I am nowhere near healed, I am getting slightly better. However I do have to prepare myself as best as I can because TSW is very much a 2 steps forward 1 step back process. That’s important to not forget otherwise you will just spiral into depression.

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Luckily my eyelids are doing hella good! I was really worried about them for a period of time. Ears are still affected but only the front. The first flare it was the back too and that was so uncomfortable when I was trying to get some sleep.

Some good news to note is that TSW is finally finally getting some more awareness! I was reading somewhere that it has been recognised by some Eczema Associations. (I can’t remember which one) Plus a few stories in the news too! I’m so excited to see it gaining more attention. It can only mean good things.

That’s me for now. Hang in there, all you out there. Stay strong and don’t give up. You are not alone. X

Day 360

11 Months and 26 days in!

HOLY what cannot believe I have made it this far. Almost one year! I have been so out of it that I really have not been good at documenting my progress. I had another flare around Christmas but nothing as bad as the initial flare. A few spots of ooze cropped up. On my chin in particular. This flare is still full body though. It’s that dry, crazy shedding type flare with lots of tiny dotted scabs. I think I am coming out of it though. The progress is slow but at least it’s endurable.

However the flare is bad enough that I am housebound again. The cabin fever is real, guys. I don’t know what I would do without tv shows/games/books to distract me. I’ve been living this kind of half life for so long. I don’t even remember what it’s like to have a full nights sleep. Hopefully this year is gonna bring me some better times!

My arms were looking hella worse a few weeks ago but they are calming down a bit. They are ridiculously itchy though.

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My left and right inner leg. My god they have come a long way!! I remember when they were so bad and oozing I would rock back and forth in pain. Makes me really glad I took photos at my worst.

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My outer right leg. It feels worse than it looks. Just lots of shedding and bumpy. But again I can’t really complain.

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This is my ankle. You can really see what I mean by the weird dry flaky dots. Oh and my hairy legs hahaha.

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These things are back! They only last a couple of days before they flake off and disappear.

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My face is doing ehhh ok. My eyelids have this split in them and one morning they started bleeding. I’m talking droplets of blood. I freaked the hell out of my mum. I was just like “What? Did you accidentally delete candy crush again or something?” I laughed. She didn’t.

No more eyebrow oozing which is amazing. The patch is gone! There is only that bit on my chin. My face just sheds and sheds like the rest of my body. My scalp too. That annoys me to no end. Also no more balding! Glad that bald patch grew back. Phew.

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Fingers crossed my next update is not months away… 😄

How you all doing? X