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 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… 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…

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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 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 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

Day 100

3 Months and 11 days in! Aww yeah!!

Just a quick post today, wasn’t really planning on doing one but I had to because 100 DAYS hooray!! In the beginning, 100 days seemed so far off in the distance and now I am here it feels good! 🙂

The flare is now concentrated in certain spots and not so spread out as it used to be. My legs are still giving me hell but my face is doing much better and not as oozy as it was.

Photo dump time!

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Hang in there, tsw warriors!! xx