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 !! 😄

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

 

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

Welcome!

When I first stumbled on ITSAN and Topical Steroid Withdrawal I spent a lot of time reading. There are so many blogs out there by fellow sufferers that I was overwhelmed. I never thought that I would become one of them.

The more I read, the more relieved I became. I wasn’t going crazy and there was an answer to this eczema madness! A lot of these people inspired me to blog about my journey so that maybe others who follow this hard journey don’t feel so alone.

My history with eczema begins at birth. I had it bad as a kid and had to be bandaged every night with cream to stop me scratching. At that stage I was using a mild cream, hydrocortisone and a lot of it too. Then when that stopped working I was on Celestone (betamethasone valerate) which was the next level up. When I was about 7 or 8 the eczema died down and I was all good until I was 16. That’s when I started using Eleuphrat (betamethasone dipropionate). The eczema disappeared and I thought I was safe.  Until I was 21.

Things were getting serious now as I was basically pouring money into dermatologists and these creams. Thinking back I feel like I payed money to suffer like this!! What the hell, never touching those steroids again. Over 2 years I was using some potent stuff. Elocon (mometasone furoate) being the main one. I had also been through 3 rounds of Prednisone (the best but ultimately worst thing ever). 2 months ago I was hospitalized and prescribed more steroids.

When I got home I thought about those damn pills and why was I taking them if they weren’t working? I turned to google and that’s when I was hit by a ton of bricks. Topical Steroid Withdrawal. I was exhibiting all the signs! The red, the itch, the peeling, the oozing. I’ve spent hours researching as much as I can about it and it shows that other bloggers have been too.  I know it’s gonna be a long and hard journey but at least I have some answers. I had the mental relief but not the physical relief. I’m sure that will come later.

So here’s to adding my blog out there in the hope of raising TSW awareness!!