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

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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 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 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

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 64

2 Months and 5 days in!

TSW is one heck of a journey and I think anyone who goes through it can agree that it’s like being trapped in your own skin. There is no escape and you have no choice but to be strong. It’s like a test of endurance. I have to remind myself constantly that I am not suffering for no reason. It’s all going to pay off. I’m going to look back on this one day and think “Hell yes, I beat TSW! I whipped it good!” And then I am going to laugh as I put on jeans with ease, wear black clothes confidently and sleep for 8 hours straight like a boss.

We’re not called Skin Warriors for nothing!!!

This past week I have been doing the Epsom salt baths. They are amazing. Actually I’m not yet sure if it’s the salt that’s doing me good. It might just be that I find myself really relaxed in the tub. I actually dozed off, that’s how relaxed I was. I have a hard time getting out because that process of drying and putting on clothes is a nightmare. I will have to do another few weeks and see how I progress with the salts. But so far my skin seems to like it.

This is my arm right and (pot) belly after getting out of the bath

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The oozing is getting worse though. Not so bad during the day as it dries so my skin is just tight but at night it’s waterfall city.  My leg which is a grey colour from the ooze. Usually it’s a purple/red colour.

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And lastly my neck and face which has gotten even worse! The ooze monster is spreading… This must be a flare. I have no idea what to expect most days because my flare cycles have no pattern.

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Stay strong everyone!! Xx