Day 1506

4 years, 1 month and 17 freaking days.

Yeah I really can’t believe it. To be honest I have no idea where time went. After my last post I was doing well. Then I got a flare and I kinda had to suck all my energy in to deal with it. I wasn’t very good this round with photos. So apologies for the inconsistency of them all. I was so disheartened even knowing this could and most likely would happen. But I did what I usually do and just soldiered on.

This flare was very challenging. It lasted quite a few months and it is still not through. I soaked in epsom salts every day for hours and that was the only thing that really helped. I am doing much better but goddamn these photos are scary. So. are you ready?

Gonna be a long post as I have a lot of catching up to do!

Torso

My belly became very flaky and patchy which was better than a full blown wound.

Aug 2017

Sept 2017

Left Arm

So my arms copped it really bad. And I had them bandaged as the weeping was insane. Such an angry photo.

Aug 2017

Sept 2017

April 2018

Left Hand

Aug 2017

Sept 2017

April 2018

Right Arm

Sept 2017

April 2018

Left Leg

Sept 2017

I also got these little splits in my joints behind my knees. That was new. Walking became a nightmare.

Dec 2017

April 2018

Look at my long leg hairs that I have not touched for a year due to not caring.

Weird angle I know.

Right Leg

I don’t know why I couldn’t find any older photos of this flare, must have disappeared into the abyss of my cameral roll. It was much worse than this though.

April 2018

Neck

So my neck was the hardest to deal with. Sleeping was pretty much nonexistent as lying down made it all hot and itchy.

Oct 2017

April 2018

Neck is better but it kinda moved to my shoulder.

Face

My eyebrows fell out 😦

March 2017

Sept 2017

April 2018

Okay so face is also tons better and I don’t really need that little bandage. It’s just a little red patch BUT I wear glassed and if I don’t put it there it rubs on my poor cheek and makes it worse.

See!

Also kinda unrelated to TSW but a couple of months ago, right above my belly, I started getting this patch of boils. I was the most painful thing ever and I think it was a carbuncle? Anyway for a few days I was on the ibuprofen as nothing else would help. it was excruciating! And this is coming from someone who is no stranger to pain. I’m talking throbbing ‘please don’t talk to me or make me move’ pain. I ended up having to just wait it out and let it run its course. I took a photo after it had kinda deflated and this was after a shower. So weird.

It’s doing much better now.

Seriously at this point I was just throwing my hands up like ‘why this happen to me?’ haha.

Ahh such a mess I know. So more news is that I saw a new doctor. A really great doctor. One who not only knew of TSW but has actually been through it herself! I was amazed. I was relieved. To have confirmation that I am in fact not a crazy person and that everything I have been through so far hasn’t been for nothing.

She also gave me some great advice.  A few months ago I started to use moisturiser again after a few years of nothing. My skin took to it well and I kept that up. However I recently noticed that I began to get very dry and flaky if I didn’t do it often enough. To the point where I had to apply it around 3 times a day. When I mentioned this to the doc she said  my skin was beginning to rely on it and create a dependency on it. Fml moisturiser withdrawal round 2 guys. Even though I have been through this before I forgot how hard it is. That’s why in the photos my skin is so dry. Ugh a setback but at least I’m on the right track now.

She also said diet is very important. She said one of the most important things to avoid are sulphites. Which is a preservative in foods. To be more precise, preservative 220-228. I won’t go into detail about this as this blog was always about my own experiences and not a source of information (I am not qualified for that!). So no alcohol for sure!

I walked out of her office feeling so much lighter. I would have happily paid her fee doubled.

So yeah. That’s what I’ve been up to.

Battle on I suppose.

Chi xo

 

Day 1014

2 years, 9 Months and 10 days in!

Hey y’all! It’s that time again, where I begin to feel guilty about not updating.. Things have been hectic! I finished exams (AND PASSED) and am now set to graduate which is exciting as hell!

Skin has been up and down and all over the place. Still going through flares and such. No where on my body is completely clear really but it’s ok. At least it’s not bleeding and weeping through my clothes. I only took a few photos this time though. Not too much to update from last time, so short post this time round!

My arms are probably doing the worst atm. Summer is here and heat makes me flare terribly.

Legs are doing ok tho! Just dry and flaky. Those white marks are what happens when I scratch.

Those massive open wounds are now a distant memory. I had those for over a year and I cannot believe how far I have come. It’s still patchy and dry and those spots are from flaring. But I can def manage.

My poor face! I’m trying to stay cheerful!

But on a good day I can put makeup on and I’m all good! Some days when my skin is terrible and I do makeup you can kinda see how flaky my skin is.

But as I said. Good days are goooood. (And 100% no filters, guys!)

My hair is finally growing back and looking the way it used to before this mess. SO LUSH!

So still a positive update!!! Not at the end yet but certainly through the hardest times. I hope you guys are all well and looking forward to the holiday period! We all need some cheer because 2016 was such a shitty year right?

Take care everyone! Stay safe! X

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

July

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

July

Right Outer Arm

Jan

July

Un-freaking-believable

Right Inner Arm

Jan

July

Left Leg

Jan

July

Right Leg Top

Jan

July

Right Leg Side

December

July

Random Thigh

Jan

July

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.

And this is me on a good day!

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)

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 669

1 year, 10 months and 1 day in!

How is everyone doing?! It’s been quite awhile since I’ve updated!(as per usual…) I’m not doing too bad atm although it is summer here and that’s a nightmare. Last weekend it reached 41°C!!! (That’s 105.8°F!)

My skin has been doing great although I am still flaring in some places. I have a lot more areas of clear skin this time around. The worst places are probably my arms and legs.

Well. Let’s get right to it!

My arms have these crazy ass flares on them. Super sore but I’m glad they aren’t on my joints. The rest of my arms are clear and my wrists look amazing.

My legs are… well getting better. Slowly slowly… still hairy but what can you do.. I took progressive shots so you can see how crazy the flare develops.

June

August

December

Inside right Leg flare

June

August

December

Inside left leg

June

August

December

Both my outer leg are getting pretty clear!

My face however has improved a lot!!! My eyebrows are coming back and less weepy overall. Just flaky with a few small patches. I took these about a month ago.

I know these photos are pretty horrible but that’s about it. All the other parts of me are clear and doing well! (Like my neck, torso, thighs and upper arms) SO happy it’s not full body like it was last year. I am able to go out a little more. I just have to bandage up the wounds when I do.

These photos were taken last week! I went out for some fun and I felt pretty good! (You can see in the photos a peek of the bandages on my arms under the jacket haha) I had some makeup on and it didn’t irritate me at all 🙂

Umm who is this person am I right?… hahahah

Anyway I hope everyone has a Happy Christmas and New Year! Take care, stay safe and hang in there!

Lots of Love 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!

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

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.

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

That itchy flaky skin extends a little past my ankle.

My belly too…

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…

Then this happened…

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.

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.

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.

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

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

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

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.

Fingers crossed my next update is not months away… XD

How you all doing? 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…

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

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.

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

Sorry about them shitty photo angles.

So how’s everyone else holding up? 😀

Day 193

6 Months and 12 days in!

Holy frickle frackle, I have no idea where time went! Since the last post I was steadily improving and doing pretty well. Out and about a bit more, getting more comfortable in different clothes. The oozing was almost gone except for on my legs. However I am pretty sure I am now moving into the dreaded second flare. No idea if it will be worse than my first flare. But at least this time I am totally prepared for whatever is going to hit me.

My arms are getting bumpy and my thighs look pretty much the same.

My legs are still crazy looking. Recovery is sloooow. Sorry my legs are hairy but seriously that is the least of my problems. Hahaha.

My scalp is still shedding which annoys the hell out of me. But at least my hair is not coming out in chunks anymore. My balding patches are filling in!!! 🙂 My face had a few weeks of being really good and just flaking a little but it looks like the flare is coming back in full force. My neck also starting oozing a little bit. Not enough to cause major discomfort but still…

Yeah I’m not the best at taking selfies. 

So lots of people have been asking me about my daily regime. I am still doing no moisturisers/shampoo basically no products on my skin. That works the best for me. I shower every day, no baths because of my poor legs.  My diet is everything I want to eat. In moderation of course, I noticed too much sugar makes me itch. But food generally makes me happy. I am taking vitamin D and probiotics though. I’ve tried heaps of other supplements but I noticed they help me out the most.

I’ve also been asked how I cope with TSW as I seem pretty positive all the time. Honestly it’s because when I started all this I expected the worse. I told myself to be prepared for the worst situation possible. I don’t hold on to any hopes of healing in a short time frame. Instead I hold on to the hope that this isn’t forever and that I will eventually heal. Of course I did go through like a 3 week period of self loathing and depression but it just wasn’t my style. I knew there was no alternative route except to deal with it and get through it one step at a time. I’m not one to let shit get to me. It also helps that I am lucky enough to have an amazing support group. 

On a more exciting note, I recently met up with the amazing Esther and her husband Rhys. For all those familiar with the TSW blogs you should definitely know her. For those who don’t know her, check out her blog because she is an awesome blogger and writer. 

http://estherminusts.wordpress.com/

She is in Melbourne at the moment visiting from the US so I was lucky enough to catch up with her for dinner before she jets back home. It just felt good to talk to someone who knew exactly what you were going through. We had so much in common it was hilarious! Thank you Esther and Rhys for coming to meet us, we had a blast!

From the left, my boyfriend Chris, Rhys, Esther and me!

Seriously Chris and Rhys are amazing as they are both so supportive. It can’t be easy having a partner go through TSW. That’s why I feel I can’t really complain as some people have it much worse! 

So how’s everyone else doing? X

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.

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

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

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…

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

Day 118

3 Months and 29 days in!

Went out for the first time in soooo long the other day! I saw Maleficent with my family at the cinemas, it was awesome! I was so happy as I got to wear my new Burberry trench that I got in Japan right before I started TSW. I’ve been looking forward to wearing it for so long and finally the day has come!! 😀 It was black too so I felt the victory even more! It’s been cold here so I have been loving the weather. Melbourne ❤

I am definitely moving out of the first flare it seems. The symptoms are much more manageable. The chills have gone and the weeping is not as widespread. My neck and behind the ears are better. Gone are the days when I has tissue stuffed behind my ears and neck! I think I went through a solid 2 months of constantly mopping in those places so it’s nice to wake up and not feel super gross for once.

I’m still shedding and flaking but not as much as before. Scalp is still driving me nuts and flaking a bit but I just deal with it because a few weeks ago it was oozing and soaking through tissue like crazy so this is a definite improvement. I haven’t been able to handle a salt bath though! Ah well I’m sure that day will come too.

I went to the GP for some help on sleep and a medical certificate. He took one look at me and was like ‘you goin’ all aboard the steroid train!’ Hahaha no he didn’t say it like that but he was very nice. I explained that I was already seeing another derm and that I was def not going to take anymore TS. He was happy to just let it be when he heard I was already seeing a specialist. The only thing he would prescribe me for my sleep was Phenergan aka antihistamine. However he told me if I take it I should avoid sunlight as it can lead to solar dermatitis which is sun rash. WTH I don’t think I’ll be taking them antihistamines. Not that I go out in the sunlight much anyway.

My belly looks like this every few days. They kinda have mini flares that last a few days and then fade away. The white marks eventually fade away too after a few weeks.

My arms are no better or worse. Got nothing to complain about there really.

You can see the weeping is pretty concentrated now. Before it was just everywhere and covered much larger areas. It still itches like crazy though. This is my left leg underside.

Left leg outer – Leg is either fat or swollen (edema) maybe. Nah probably just fat.

Right leg underside

My face looks like this in the morning then it gets a bit better throughout the day. Not as rough looking. Overall I’m pretty happy with the improvement. The open cuts around my eyes are finally closed! 🙂

My hair is not falling out as much!! Hooray! Plus my eyebrows are filling in. 🙂 I only have that tiny patch on my eyebrow that still oozes.

I wonder how long this healing period will last before the second flare hits?? I wonder if I will even have a second flare. I wish I knew but I guess for now I’ll enjoy whatever healing comes my way! X