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 !! XD

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 242

8 Months in!

Um so I know I haven’t updated in awhile.. but this time I really don’t know where time went. I’ve probably been subconsciously avoiding doing an update which is code for I was lazy.

I kind of went through another flare, you know the whole 2 step forward 1 step back business. So that was kind of crap but I’m bouncing back much quicker this time. I’m still not doing anything new.. just going along with my usual routine. Nothing much has changed – still broken sleep, crazy itch and even crazier shedding.

I haven’t gone out as much though because Melbourne is moving into spring and pollen is everywhere!! So it’s been so lovely and sunny but no, inside safer. Hahaha.

I’ll just take some quick photos of the more affected parts. This latest flare is different in that it’s across my whole body but it’s more tiny scabs and little bumps. It’s like a dry flare not nearly as oozy as before. My arms are actually good here they were a lot worse a week ago. Talk about ups and downs…

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Legs also got worse this past month but have been improving this week. What a long way they have come!

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Sorry my selfies are crap. I’m no good at taking photos of my face. It’s getting better and is pretty manageable. That oozing spot on my eyebrow is FINALLY shrinking. Bout’ time mate! My scalp is being very annoying though with the shedding.

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And check out that hairline!!! Balding no more! Ohooo!!

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Sorry about them shitty photo angles.

So how’s everyone else holding up? 😀

Day 143

4 Months and 23 days in!

Things have been going pretty OK, I’ve been out and about a little bit more. Feels good to have a change of scenery! Last week I spent a whole day out. Went shopping and then out to a fancy dinner to celebrate my 4 year anniversary with the boyfriend. I had an amazing time but by the end of it I was keen to get home and into my cotton pjs!!!!! 🙂

Haven’t been taking any baths although I think I can tolerate them now. I think I just prefer showers but I will have to start again soon. Sleep is still a battle so I take it whenever I can. I’ll get in a few hours around 11pm to 2am, then another ‘nap’ at 5am to 9am. I can never sleep through! Oozing is more under control. It’s just my legs and that annoying spot on my brow. Still flaking and shedding all over though. My scalp is still driving me batty but considering where I was a few months ago I really got nothing to complain about. I don’t know how I got through that stage of oozing on my scalp and matted hair. Also I noticed that my skin smells like burnt rubber. What is up with that?..Erghh..

Arms have not changed at all.

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Legs still in hell. They weep and bleed and are so painful!

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My face was doing ok but that spot on my brow still won’t stop oozing!!

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Then I went outside for a bit and it completely slashed my face 😦 So dry and flakey! It’s the middle of winter here so I won’t be leaving the house again any time soon…

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Still hanging in there!! Hope everyone else is doing much better than me! xx