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

 

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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.

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

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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…

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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!

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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 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.

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

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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.

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

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Right leg underside

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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! 🙂

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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.

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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

Day 94

3 Months and 5 days in!

Still in the middle of a major flare over here. Keeping my spirits up but I wish I was getting more sleep. Previously I was getting around 4 hours but this week I’m lucky if I get 2. I think it’s time for a trip to the Dr for some sleeping pills!

The parts of my body currently not affected are my fingers, palms, nose, upper back and toes. I find that every few days parts of me will get worse but then other parts of me will get better. Just like a little roller coaster.

I wake up everyday not knowing what to expect!

So my arms are doing much better. The joints are alright, no longer oozing. But my wrist is extremely itchy and oozing. Hahah it’s migrated.

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My belly is overall just rough and it only oozes if I scratch it ( which I totally do sometimes..).

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My legs have it worst by far! Sometimes the pain and itch is so bad it’s like I’m getting stabbed by needles!

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My face hasn’t really changed either although I am still losing lots of hair! (And oozing..can’t forget the oozing..) Neck is still swollen but not oozing as much! Hooray! I’ll take whatever positives I can get!

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You can see the scalp is doing no good. It’s pretty annoying actually as the ooze just makes my hair all matted and it’s just itchy. The amount of skin I shed from the scalp is scary.. Still, I’m trying to hold onto whatever is left of my eyebrows! I hope they don’t all fall out!

Got this amazing care package from my awesome friend and his family. Is it amazing or what! Cheered me up plenty! What a lucky girl I am!

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Can’t wait to hit 100 days! Hope all you skin warriors out there are doing well!!!

Day 82

2 Months and 23 days in!

Boy does this journey get harder and harder! This past week I have gone back to not being able to tolerate the epsom baths. My entire body was just stinging and burning like crazy so I am back to working myself up to have showers. In the beginning I found that if I was having a bad day I could forgo a shower or two. But now that the oozing has escalated I can’t really go a day without. Especially as my scalp is now particularly bad and when I wake up it’s just matted and gross.

As I approach month 3, I definitely find the itching sensation getting worse and it feels like it’s deep within the layers of my skin. It’s so hard to describe it’s not a normal itchy feeling. Sometimes my body will randomly convulse due to the itch, like I am having some kind of fit! The shedding is still insane, I only have to run a finger across my forehead and I can make it snow. :O

My legs are having a hard time atm. Very raw and sore!

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My neck is the only place on my body experiencing edema. Strange. It is still oozing but not as much as it used to. Just in the crease really. Maybe it doesn’t feel as bad before because now the pain on my face eclipses everything else.

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My face is giving me the most grief! Very sore and oozy. It’s pretty bad behind my ear too!! 😦 I also wear glasses so sometimes that can be difficult.. Hahah can’t catch a break!!! My nose is the only place not affected!! Along with my fingers and toes. Everywhere else is game on..

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Also my hair has been falling out at an alarming rate. Balding patches!!!

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Scary huh? I really don’t know how I have the courage to take pictures sometimes.

I am still not using any products on my body. Moisturisers are a distant memory now. I don’t even notice not using it now. I seem much happier without it really. It’s working for me. Sleep is still crap but it seems like I make up for it with my appetite. That hasn’t changed haha!

OH, also shout out to the new forum over at No More Steroids!!! So excited for more TSW awareness!!! Big thanks to all the effort the guys over there have put in! Woohoo!

http://nomoresteroids.com/

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Day 56

1 Month and 28 days in!

It’s Autumn here in Melbourne but I think I am feeling the chill a lot more! I’m constantly shivering. Methinks this is something to do with the oozing. Or the sweating. These days have been a blur of crazy symptoms. And laundry. Never done so much laundry in my life. I also started getting really swollen lips, it looked like I had sausages for lips!

My daily routine is pretty slow paced. Night time is the worse. I’ll be in bed and will spend roughly 3 or 4 hours trying to get comfortable enough to sleep. Most nights I sleep at an elevated angle. Lying horizontally makes my neck ooze and sting so badly. I will get a nap in around 5am for an hour then lie there for a bit trying very very hard to not scratch. Then around 6am ish I will nap for another 3 or 4 hours. The bit I hate the most is peeling myself out of bed. I feel so gross! For some reason I always think of Hansel and Gretel. When Hansel leaves the trail of breadcrumbs behind him in the story. If it were me, no problem. Just follow the trail of skin flakes. I’ll never get lost again!

I usually jump into the shower and the first minute is painful. The burn eventually subsides and I can just enjoy whatever comfort I can get. Sometimes I’ll be so sleep deprived I’ll lean my head against the shower wall and doze off. Then I have to cheer myself on to get out. I’ve been doing MW for a fair while now so it’s not so bad letting myself air dry. I know I will be super dry and tight but at least I know what to expect. I’ve had long hair my whole life but recently I cut my hair short to deal with TSW. Sigh. I can’t wait until I can grow it back!

The rest of my day is spent hobbling around the house, eating and doing laundry and other chores as best as I can. I shuffle around the house with my arms crossed because my joint are too sore to be stretched out. I’m very lucky because my family are quite supportive so I don’t have to much to stress about. Just recently I have even been letting some close friends come around to visit. Previously I didn’t want to see anyone! But they bullied me into seeing them haha. My bf has also been very very supportive. Even changing my bedsheets for me and buying me my favourite treats. I know it can’t be easy for him to see me suffer and I know some days I’m an absolute mess to deal with. I consider myself a very lucky girl! I’m trying to stay as positive as possible and not fall into depression. So I remind myself how lucky I am as much as possible. I think it’s important for anyone going through TSW to have support. Doing it alone is too cruel!

Ok onto progress pictures!

My arms at the moment are the easiest to deal with. I have started to keep my elbow at  90° at all times so the joint is healing nicely. 

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My legs and belly are in the middle of a flare. They just bleed and weep through clothes.

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My whole belly is covered at this point. I think my back is relatively ok. Also wearing a bra sucks. It sucks a lot.

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And lastly my face!! I think the worst out of my whole body is my neck. I find it so hard to just let it heal. And it just stings so much! Ahh!! I’m looking forward to that part healing the most!

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oh and just for reference… one day’s worth of shedding… just from my arms!!!

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How is my body even doing this!?! It creeps me out!!

Day 48

1 Month and 20 days in!

So I totally forgot to mention that yes, I am doing moisturiser withdrawal. I started probably 1 week into TSW. I was pretty skeptical in the beginning but then I thought I really don’t have anything to lose. I had already taken time off both work and uni so why not?

The first few days were hard! It was as much a mental battle and a physical one. Skin was super tight and very uncomfy for the first hour or so after showering but then I found the rest of the day was more bearable then if I had moisturised. I definitely think MW worked for me. It let the ooze dry and didn’t leave me feeling ‘wet’ all the time. Plus the moisturiser I was using made me burn.

I’m starting to sweat like crazy too. Sometimes I have no idea if I’m sweating or oozing.. Although sometimes the ooze is stickier and has that metallic smell. I hate that  😦

My arms are going through a flare I think! Very itchy and oozy. This is right after a shower so it doesn’t look as bad as it feels. My arms are no longer red but have turned this colour instead..

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My legs have also turned that strange purple/dark blue that I have heard so much about. This parts not so bad but it’s all raw and oozy behind the knees :s When I try to sleep my legs are bent at all weird angles to try and get some comfort!

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I’m actually really impressed when I see other bloggers take photos of the back of their knees by themselves. What the! it’s harder than it looks! It fricken amazes me because I can’t bring myself to twist that way. My belly is way too raw .

I’ll try and take some better photos with better angles in future. I’m so sick of always looking at my skin. Can’t wait until it’s no longer such a priority! Eczema, get away!!