[special post] monster and i

i know i shouldn’t post two posts a day, but i just have to share this with you all PRONTO.

i was showing one of my gf how i looked at my worst and.. i realize i didn’t share these photos before.
how could i not?

what time is better than RIGHT NOW? i’ll show you the comparison so you can see for yourself.


5 November 2011, month 8 of withdrawal. this is supposed to be my second flare, also one that lasted for several months. it look worse in flash photography, because it highlighted all the red areas and the dry areas.

if i remember correctly, i just had a sweet scratching time which explains why my eyes lid areas are red, because those skin had fallen off.

thank you, i know i look like a freak here.
i can’t believe some friends of mine can say “you actually don’t look as bad as what you described.”
i guess they will never understand how i felt back then, it’s okay, i don’t blame them.
i wouldn’t want them to go through what i did.


this was taken in november too, probably a few days after the first photo.
it doesn’t look as bad as the first pic. but you get the idea.
i still think i look like a freak.

i feel for those who have harlequin ichthyosis.


in december where things have calmed down just a little, and where bloody wounds started to develop.
check out my swollen ear too!
you know what it feels like, it feels like when i just got my ears pierced.
red hot and swollen.

i want to thank myself for picking up the camera to snap photos of myself back then.
usually i will review the photos to see if i’ve framed myself properly, but back then i didn’t even have the courage to do so.

for a few months i couldn’t look at any of the photos i’ve taken because they hurt me just by looking.
but right now i’m totally immuned from it already.🙂

this is how i look like right now, to give you a better idea of my facial skin.
toyed around with the colours and lightings but did not air brush my skin.
i wore some make up🙂 but as you can see, it’s smooth as ever.
my brows grew back, so did some of my baby hair.

if i can do it, so can you.

god bless, my skin warriors!❤

p.s. you might be wondering, if i have already showed you guys my bare face, why do i still bother to censor my eyes with my favourite black rectangles in photos where my skin was bad? IT’S BECAUSE, i don’t want people to recognize the ugly me.😛 and there is this sadness and helplessness in my eyes that i don’t want anyone to see. i’ve seen it and it looks pathetic. i only want to show you all the confident and happy me.🙂

53 thoughts on “[special post] monster and i

  1. Juliana – You look so beautiful! I’m just starting on my own journey. Only three weeks in and already ended up on antibiotics due to a staph infection. I have a long way to go, but just looking at how beautiful you look gives me hope that someday my face can be clear too. Thanks for posting and giving people like me hope.

  2. Unbelievable pictures, Juliana. So brave of you to go through the furnace, and to post the photographs too. You look stunning now! I wish all the dermatologists in the world could see your pictures – and your healing. I don’t know how you managed! So many months of agony. I am so, *so* pleased you’ve got through to the other side. Onwards and upwards! Elaine xx

    • thanks Elaine🙂 yea I still can’t believe I shared these gruesome photos, but really, seeing is believing. want everyone to have hope because the TSW process takes hope away from us.

      xoxo

  3. Thank you so much for posting this,im a 21 years girl from Hong Kong and i’m going through the same thing but i just started,and its only 2 weeks ,i was so depressed and crying everyday when i wake up seeing my face/hand/leg like whole body is so red and its so painful,it feels like i will never heal,but your blog gives me hope …http://eczema-suffers.tumblr.com/ this is my journey of topical withdrawal steroid,i really hope at the end i will be like you,back to a normal life and be happy again ! and again,thank you,thank you so much for posting your journey🙂

    • you’re most welcome, crystal. 3 weeks, you already did very well! just got to hang on tight because this journey is gonna take some time.

      I totally understand how you’re feeling now, just cry it all out. but you gotta remember : nothing is permanent. this phase will past and be behind you some day.

      talk to me whenever you need😉 I can type Chinese if you want to.

      god bless!

  4. WOW!!!!! you are a skin hero! congrats and enjoy this new fresh start to the rest of your skin trouble free life! thank you so much for the before and after pictures! god bless you!

  5. 你識中文,咁就好喇🙂 今天只係我的第3個星期,但我已經很沮喪…不想去見朋友,因為我怕我會嚇怕他們,不想外出,因為別人看我的眼神好像我是一個怪物…但你的文章另我知道,只要我經歷所有痛若我的皮膚係有的救。兩年之前其實我已經試過成身紅曬,但我只會去醫院,但醫生只會給steroid 加Vaseline 整個treatment 只需要5天時間,我就會全身好返,但出院後我的皮膚又惡化了,現在先知道是STEROID 另到我的皮膚咁樣。。我想問在你治療中,你會不會出去行下?會不會對皮膚好一點?

    • 醫生只會不斷咁開類固醇俾你,我以前都係咁〜不過算啦,宜家好得7788我已經好開心,都懶得同d醫生計較,同佢地講TSW根本就係對牛彈琴!
      我初期(一開始到差唔多8個月)都有番學,不過自信心嚴重受創,係課室既表現變差咗,成績有受影響。之後既1年我冇再出門、一路都係屋企。大佬,你都見到d相喇,有乜可能咁既死樣出去?T.T 嚇死街坊!
      我覺得最重要係自己感覺良好. 如過我要出門我會擔心好多嘢,搞到我好唔舒服咁〜 我都成兩年冇見我d朋友。 一開始真係好灰,灰到變黑嗰隻!我諗你宜家既心境就同我嗰陣一樣.. 希望你睇開d,解釋俾你d朋友聽,話你出街會唔舒服,如過真係有心既,可以上你屋企探你既!(不過講真,當時我乜鬼都唔想見,就連當時既男朋友都一樣)

      你擦藥擦咗幾多年?希望你會好得比我快喇!

  6. you look beautiful juliana!! just stunning. cant believe how far you’ve come. i am only 3 months in and have a long way to go, but your story really encouraged me to stay strong and know we’ll get through this. like u said, it is only a phase and we’ll be healed in the end. thanks for sharing your inspiring story and photos. you’re an inspiration to all of us going through this nightmare.

    • thanks kathryn! really happy to know that my sharing is able to help people. keep up the good spirits, TSW is like a freaking death eater (you watch Harry potter?) that sucks every good feeling you can have. brace yourself!

      and god bless you.

  7. 我擦藥,又停下又擦下都有5ï¹£6å¹´….可能有排熬。你都好利害,忍到第八個月先停,我一紅就已經停曬全部工作,我沒有讀書了,打碟係我既工作,我無可能再熬夜.老闆見到我咁都嚇死佢..我覺得最辛苦係起身個一下,全身好乾燥,重有皮膚既味道好難受…..你有冇食藥令自已訓得好D?

    • 我去睇下你twitter〜 同埋你個blog,你好型呀!你做DJ?>_< 下次要支持下你先得!
      5-6 年,其實呢,我係成個論壇入面好得最慢嗰個,可能係因為我擦咗8年(每日當佢係body lotion咁擦勻全身=_=)。你唔好太灰心喇〜 你應該會好得快過我! 俾你自己一年時間喇!就當係體驗一下另外一種生活。
      等你好番晒你就可以繼續做你鍾意既嘢,而且會更加享受添!
      you can do it! I know it feels like you are losing a lot, but you will gain them all back in time.😉

    • 唔記得答你條問題。我曾經試過d anti histamine,冇用。加dose,都冇用。食melatonin,更加冇用。之後我唔鬼理佢,想訓自然會訓著。睡眠係一定會被影響到,我試過跟住美國時間黎訓,哈哈!6am 訓到 2pm,跟住一路用電腦到凌晨2點,上床R痕。R到訓著為止。
      係呀,起身個下最辛苦,所以應該快d沖個暖水涼等d皮膚濕潤下,之後擦vaseline保濕(雖然效果不持久,不過好過冇)。

  8. Hi, I used a potent steroid on my face for 1 month, because my derm told me too… I had some kind of eczema on my face , it all started with a irritation and I think the things became worse when I went to tan, altough I was wearing spf 15…Second day my face looked horrible, bumps, red patches, etc, so I decided to go to the derm and he gave me Advantan, which is a potent topical steroid, I’ve used it one week and my face cleared up, but after stopping it everything came back even worse then before, I used it again for 2 days and againg thing were good when I was on Advantan, but after stopping it was much worse… I did this for 1 month or 1 1/2 month, but finally I decided to stop that and throw away the steroid. It was horrible, my face was burning, red, with bumps, white heads, red patches, uber dry skin, flaky, and all that…It has been 2 months and my skin still burns sometime, I feel like I have fever(as u said in your posts) and when I am nervous, upset or anything my face turns out very red and I feel like I’m burning. My bumps with white head are itchy and the problem is that no derm knows how to treat me, they gave me antibiotics and metronidazol creams… Do you thing that 1 month of using advantan could gave me red skin syndrome?

    • hello, I am not too sure how to answer your question. I think it’s best if you ask dr rap about this to get his expert opinion. I can only say the symptoms you described sounds like TSW, but will you get addicted to steroids in a month? I don’t know. it could be a rebound from steroid damage.. but all I can be sure of is, if you stay off the steroids, everything will heal with time.

      • And can u please give me Dr. Rap’s e-mail adress, or how can I get in touch with him? I am sorry if you have already written about this, but today I found your blog and I read just a few posts.

      • Thank you very much! I hope my face will be normal again…I was afraid to wear foundation because one of the derm’s told me not to wear.. but I feel so ugly without make-up.. so I started to wear at least foundation, but tried to buy a foundation without irritants , like fragrance or denat. alcohol. Kisses!

      • i think you can try mineral foundation, since it’s said to be best for sensitive skin. please do whatever that makes you feel better about yourself, as long as it doesn’t irritate your skin.😀 good luck!

      • I received answer from a manager when I e-maild Dr Rap, and he told me that I have to pay 300 $ for the answer. I am Dr. Marvin’s office manager. Dr. Marvin would be happy to offer advice to you. The fee for this service is $300 for 1 email. There are other fees should you wish to continue interaction with him. This extended service and care is $250.00 per hour, with a $500 retainer in advance. A log time of time spent in 10 minute increments will be kept by Dr. Marvin Rapaport.
        I don’t have 300$ so… I will remain without answer i guess….

  9. Juliana, you’re such a warrior. Thanks again for sharing so much with us. Your blog was one of the first I came across back in December when I was looking for answers. Your photos scared me to death, but I was so thankful that I had found what I was going through. I’m on day 224 and I’ve also come a long way. Unfortunately still a long way to go. You are a beautiful woman, and I know that you after what you’ve gone through, you are so much more than you were before you started this journey. Keep us informed on your post-battle life. It really is inspiring to us.
    -Cory

    • thanks cory for your beautiful comment🙂 i will definitely keep updating. i won’t skip out on you guys. i will be here for you all ^^

      you’re 224 days in already! that means you’re 224 days nearer to normal skin!🙂 stay strong. the TSW journey has definitely changed me from within, i do feel like a brand new person having a second chance at living now! that’s why i’m happy everyday🙂

      god bless you!

  10. You look amazing!!! The before photos – during the flares are a testimony to all we go through. The pain is evident even with your eyes blacked out – I guess because we know what you went through being that we are going through it ourselves. Keep on smiling!!!

    • thanks tracy🙂 i’m sure all the warriors knows how each other feels because everyone feels like shit in the midst of TSW. it really takes one to know one. thank you for empathizing with my pain, i hope you can share my happiness right now😀 i’ll never frown again because i’ve used up all my unhappiness and depression quota during TSW. ;D

  11. 個心情已經好好多…唉,喊又係咁唔喊又係咁,就當自已放緊大假!我食左之前醫生開既訓覺藥,所以訓到覺我已經好開心。不過我知道唔可以長期依賴隻藥,唔係既話好完一樣又到另一樣有事。

    哈哈,好呀,我好返既時候你一定要黎我個場,到時一定要飲一杯慶祝。你會唔會長期係香港?其實一開始你唔同我講中文我以為你係韓國人。我原本plan 左7月去歐洲到打碟4個月之後返返美國,但依家﹣口﹣‘ 去也鬼丫。。。係屋企食Zong過端午節算喇。

    同埋我想問你個陣有冇戒口,好似薯片/pizza/煎炸食物/凍野唔飲??

    • 我之前都會一路喊, 尤其是黎M之前!!! 癡線既, 咩都喊餐矇! 我都係唔敢依賴d安眠藥, 你適量咁食啦, 唔好上癮就得! 最近要現階段令自己舒服d.

      哈哈哈 到時何止飲一杯呀, 只少幾杯啦! ^^ 諗到都開心~ 我每次返去都逗留至少3星期或一個月! 哈哈哈 哇 多謝晒囉! 最近學人化韓國妝, 俾你話我似韓國人即係我成功左喇! ^^

      喔! 原來你係美國住ga? 唔緊要啦! 歐洲永遠都會係個度, 今年去唔成, 明年都得姐! 唔好灰啦! 未當陪下屋企人囉~

      我之前戒得好清, 食得好健康. 你講既我一律戒晒! 不過我平時都少食, 所以ok. 雖然知道食療作用唔大, 不過我都係為左健康著想, 個d junk food食唔食都罷啦! 不如食d又健康又有營養既野~ 食多d蔬菜水果, 白肉, 麵粉製既野都減少d d, 戒糖 (因為聽講會令細胞發炎得更加勁), 我連咖啡,茶.氣水,快餐都戒埋, 健康到爆.

      不過之後胃口大增, 食極唔飽, 仲一路瘦! 所以食多左d包呀, 蛋糕呀, 餅乾呀.. 以為食唔肥, 結果宜家肥左! T.T 唔知係水腫未消晒定係乜, 總之你食野小心d, 因為病發根本做唔到運動..

  12. Hello juliana😀 You look great! I am amazed by your strong will. Your posts about your skin really touched my heart. I have eczema, but only on my face and hands, and I really understand what you’ve been through. I am almost a survivor.😉 I stopped using steroid for 1 year and a half, and finally I am feeling so much better. But, I used it back for these few days since Malaysia is getting really really hot! Thanks to you, now I have gathered my courage and will stop using steroid again no matter what happen. Thank you a lot. You really inspires me🙂

    • hi aishah! thanks for your lovely comment, i’m glad that you decided to stop using steroids. actually, i would say steroids are safe if you use it based on directions – that is to use it for less than 1-2 weeks consecutively. i’m sure you’ve had a bad time for those 1.5 years too, don’t let them go to waste! steroid addiction is real!

  13. Hey dear Juliana,
    my god u are beautiful!🙂 Today Im having a flare day, uhhh its soooo hot outside and the heat makes me feel itchy and a bit ill:/ So Im cheching up the pages of my skin friends. And I must say, this post of yours made me so happy, cause I can see so clearly how the skin is really improving. Even though Im in month 23 and still cant sleep, still have those wrinkles under my eyes, but hell, yeah, Im doing much better too. And some days the wrinkles are almost gone and then I feel like a god;) And there is another thing- this journey changed me personally, changed my character. Patience is one thing that we all for sure got out of it.
    Well thank u Juliana for updating your blog, its great to look at it and get some comfort from it:)

    • SPELA! i haven’t heard from you in ages! from what i remember you improved really quickly many months back, i didn’t know you’re still having some minor flares here and there.. well, i’m not completely out of it yet but what i’m experiencing now is SO MILD as compared to what happened previously. the weather in singapore these days made me perspire so much, i’m getting rashes due to my own sweat! haha but it goes away after a few days. no biggie. i hope you’re feeling the same bout these small flares too! don’t let them bother you too much😀

      i’m glad my post made you happy, because that’s my sole purpose in maintaining this blog! i still get some sleep issues here and there but again, it’s so trivial i don’t wanna let it get in my way. for example, there will be nights when i just can’t sleep at the usual time. most of the nights i can’t get an uninterrupted 8 hour sleep (but i seem to work fine with this, i don’t feel tired in the day or whatsoever! as long as the total amount of sleep is 7 hours i’m fine!).

      this journey changed me alot too. ;D they say patience is a virtue, ain’t it?

  14. Hi Juliana you look amazing! Sorry if this has been asked before but what were the signs that your face was starting to heal? I don’t see an end in sight for my little girl who is 3 months in.

    • hi jane, well.. signs that my face was starting to heal? that’s a tough one, because on a day to day basis, i can hardly tell the difference. it’s only after weeks of observation that i started to realize the skin fall has lessen, the bloody wounds will be flatter, and the ooze will be lesser too. my face didn’t get significantly better for close to 6 months, it was only in the later months that healing seems more prominent. don’t lose hope. i know how painful it is to see your baby girl suffer.. but all will pass, ok? stay strong! xoxo

  15. hi…i also have the same problem with you..can i ask..after u withdraw the steroid…what cream or cleanser that u use?

    • hi ayu! what problem do you have with me? i hope i didn’t offend you somehow in my entry.😛

      after i withdrew from steroids, i used the creams that i have always used (QV cream) and no cleanser. but the cream wasn’t able to keep my skin moisturized so i stopped using it and switched to vaseline. sometimes i just don’t apply anything at all. that was just the start. when things got bad, vaseline was all i used, and could use.

      • Yep that’s me…..he still has a way to go. Super itchy and his feet and knees and bumm are a mess. Xoxox

      • I think he has gotten a lot better already! I had something going on my legs for the longest of time (in fact it’s still relatively dry and itchy now, despite it looking like normal). hope your little warrior is brave enough to hang in there! he’ll be get well soon!!!

  16. hey juliana! i don’t even know where to start! first of all, i want to let you know that my heart goes out to you for having to go through what you did. the physical and emotional pain must have been ridiculous. i also want to say congratulations on getting to where you are now! you are so so beautiful and truly inspirational.
    lastly, i want to thank you from the bottom of my heart for making this blog. i’m only a few days into withdrawal and my face is just constantly burning already. It already hurts so much and looks so awful (even worse that I still have to drag my ass to uni every day) and I am absolutely terrified of what’s ahead. But it’s people like you who were brave enough to go through it all and show their journeys that are making this a tiny bit more bearable. It’s so comforting to know that I’m not alone and it gives me the courage to not curl up in a ball and just cry. So really, thank you.

    • hey there Rachel! thanks for leaving such a beautiful comment to show me your appreciation.🙂 it’s very rewarding when my efforts are appreciated by fellow skin friends in need of help and assurance!

      sorry to hear about your situation. I know it sucks to go to school with bad skin. urgh! I hope your holidays come soon so you can rest at home.

      you will need a lot of assurance during this period of time, hope this blog can do that for you😉 in the mean time, stay strong and don’t stop believing that you will heal.

      xoxo

  17. Hey Juliana,
    You are truly a strong girl. I am a year off steroid and still battling it off. Whenever depression over my state gets me I remember you and become strong again. You are truly an inspiration. God bless you. for showing us the light at the end of the tunnel….🙂

    • aww! thanks lutfun!!! it always warms my heart to know that i’ve given you some strength to fight this stupid condition!!!

      DON’T LOSE HOPE!!! i’ll be here to give you a jab whenever you need it.😉
      and god bless you too! stay strong!

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