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.

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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

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August

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December

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Inside right Leg flare

June

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August

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December

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Inside left leg

June

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August

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December

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Both my outer leg are getting pretty clear!

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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.

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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 🙂

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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!

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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 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 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!!