this post has nothing much to do with my TSW journey.
it merely chronicles the beginning of this blog and the thoughts that went through my mind back then.
it’s one of those days when i suddenly have something i want to say and i want to get it out of my head.
i call it, brain farts. i just can’t hold it in!
a few days ago i went to catch a movie,
not knowing much about the it, i expected a fun ride.
in fact, i opted for the 3D version just so that i can escape into the movie.
good news: i did enter the movie-scape.
bad news: it’s not a pleasant place to be in.
the movie-scape is an unpopulated dark and cold place.
you are trying to leave the place but you realize you couldn’t.
you have no one to turn to for help, and you think your chance of survival is low.
everything is out of your control and you can only foresee yourself dying there because you don’t know if there are other ways to get you out.
there just isn’t a guarantee.
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this blog didn’t start out as antisteroid.
it used to be a private blog for the sole purpose of documenting the home remedies that are supposed to help my worsening skin.
later on i started to add photos as pictorial evidence that i’ve worsened or improved.
it was started in march 2011 under another url,
before i knew i was having TSW,
before i even hear about TSW.
ok, maybe i did hear about TSW, but i was still in denial when i learnt that it takes at least 6 months to heal.
do you know how steroids distorted my definition of “fast” and “slow”?
fast = 1 day.
slow = more than 1 day.
6 months was a lifetime to me.
back then i always thought that i’ll keep this as a secret for life.
why would i want to show those sides of me to anyone else anyway!?
the photos i post are uncensored. it’s for personal reference anyway.
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when i realized i am suffering from steroid withdrawals in 2011,
i tried to scour the internet for others’ experience.
even though dr rapaport have treated 2000+ patients, it was incredibly difficult to find any reference photos or first person account of their journey.
the only thing that i can rely on was his journal, which is mostly words that required me to use my own imagination to translate those to actual symptoms.
you can imagine my (horrific) surprise when my skin performs a new trick on me.
never in my life did i imagine/expect my skin to go this bad.
it was way out of my imagination.
but i did not give up in looking for photos of TSW.
with my limited japanese, i figured out what TSW is called in japanese (i believe with the help of dr fukaya’s japanese website),
typed it into google (and yahoo.co.jp) and what returned in the results are stunning.
there are probably hundreds of japanese blog (that i can’t understand) out there talking about TSW.
i even saw photos of how TSW looked like, too many of them.
I THOUGHT I STRIKED THE LOTTERY!
so many photos that shows the many faces of TSW.
by clicking around, i landed on a japanese lady’s blog where she documents her journey.
she had a wealth of photographs there,
photographs from day 1 of her steroid (she also stopped using moisturizer, she actually labelled her entries under moisturizer withdrawal) withdrawal, all the way to almost 2 years later.
while it was really comforting at first to see photos of her recovering from a very bad flare,
it discouraged me a great deal to know that she still has not fully recovered 2 years down the road.
(she stopped updating her photographs from then on, so i have no idea how she’s doing after that. the author of the blog is clearly too clever for google translate.)
all the other japanese blogs that i found were abandoned by their owners before they healed.
i saw a lot of TSW photos,
but i didn’t see anyone who has healed from TSW.
worst of all, i saw someone who was 3 years into the withdrawals, only to be hit by a second rebound.
WTF!? you mean i might have to spend 3 years with bad skin, only to have it worsen again!?
with no one to let me know when i’ll recover,
and whether i’ll recover fully at all, it was probably the most depressing thing i’ve ever faced.
what if my skin takes 5, 10, 20 years to heal?
what if it don’t even recover to the original state, what if i’m red and dry for life?
can i even function normally like this? do i need to rely on my mother for life? i’m such a burden to her. i feel so fucking useless.
what if.. why don’t i just kill myself right now and stop all these misery since i don’t even know if i’ll be back to normal or not.
dr rap said he healed 2000+ patients but it’s all words.
where are the proof? they say seeing is believing, and i’m not seeing any.
i was in the unpopulated dark and cold place.
i was trying to leave the place but i realize i couldn’t.
i have no one to turn to for help, and i think my chance of survival is low.
everything is out of my control and i can only foresee myself dying there because i don’t know if there are other ways to get myself out.
there just wasn’t a guarantee.
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on the bright side, before i started feeling that depressed,
a surge of positive feelings hit me first.
after i landed on the blog mentioned above and saw all her photos,
my first reaction was “so this is what i have! OMG this is so useful! a picture does speak a thousand words!”.
and then i studied the photos religiously to cross reference my symptoms to hers,
sometimes i feel lucky that my skin isn’t as bad as hers (oh well, it was only a matter of time before mine overtook her severity), but seeing how she got out of her worst flare within 2 months was quite comforting.
at least there’s a time frame that i can count on.
and that was when i realized i could have done the same for others – to share my photos so that all the lost souls can identify TSW symptoms and diagnose themselves (and to a lesser extent, gauge their progress).
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as you know i’ve only gotten better in the past 10 months.
before that i never thought that i can use this place to give people hope because all the photos only showcased my skin going from bad to worse.
in any case, it probably ripped out the last bit of hope in you (seeing how long i dwelled in my flares and thinking “this could be me”).
my documentation went from sad to sadder to depressed.
antisteroid started out as a place to let you all recognize TSW and know that you’re not alone in this.
but today, i want to do more than that.
i want to give you hope that you will heal from TSW; it’s just a matter of time.
why do i want to do that?
because hopelessness (and helplessness) was the worst thing i’ve ever felt, and i don’t want anyone else to go through that.
you’re welcome, because i just saved you from all those crap that i’ve experienced 😉
i choose to look at the bright side of things.
going through that phase wasn’t entirely bad.
being devoid of all hopes really opened up my mind.
i even made friends with depression, which i wouldn’t have a chance to do so under normal circumstances.
it made me more sensitive and more perceptive to other’s reactions, finally looking beyond my own ego to listen in on others.
i’m not sure if i want to share with you guys the url of the japanese blog that led to the birth of antisteroid.
i think it’s wise if i keep those discouraging images away from you.
i hope you all understand that i am trying to protect you from a possible depressing whirlpool.
wow, that was a long fart.
p.s. did a spell check, only 1 spelling mistake!
achievement unlocked!
Juliana's Topical Steroid Withdrawal Journey 
lucky for me your blog was around for me to see otherwise I wouldn’t have done this topical steroid withdrawal at all. I’m going into my third month and things are looking up and I hope it continues that way. I’m still very dry, red and scabby but I can only think the are signs of healing. Anyways, I felt the same about keeping this as a secret but now I only wish I had taken photo’s during when it was the worst to share but I think your progress is much more hopeful to people, your transformation shows how amazing skin can be and if anything it taught me that your body is trying to take care of you and keep you alive and has its own way of healing so you should treat it well. It makes me realize that I really should be taking care of myself, doing my own research, and not putting all my trust into anyone who prescribes me a remedy. It’s so silly to think that all this started out as a dry patch on my eyelid when I could have used a bit of moisturiser on it.
Cheers,
Charles, Sydney
you’re welcome. 😉
i don’t mean to be a cold blanket, but you have to remember that it took me many cycles of good and bad to get to where i am today. even right now i still get a few days of mildly-bad skin, but i know it’ll get better after some time, and it always does 😉
i am definitely treating my body well these days! my emphasize on health has leaped several multitudes ever since TSW and i’m glad to be able to take actions early in maintaining my health as compared to many other normal people out there who’re still taking their health for granted.
it’s not too late to document! doesn’t matter if the worst is over for you. your photos will still be useful to some others who are in the same stage as you! 😉 you never know how your sharing can help others, even if it’s just one person who will benefit from your actions, you’ll still feel good that you’ve helped someone.
nothing beats your own research, but that is too time consuming, and scientific papers are hard to chew.
at least you know how to deal with rashes in the future! 😀
cheers!
Juliana your brain farts are very enlightening 😀 your write more eloquently in English than me and i assume its your second language!
Thanks for keeping us updated. At 22 months i still feel pretty crazy half the time with the ups and downs of this whole saga. Your blog just cements the fact that we are all on the right path to healing. Thanks for keeping my spirits up!!!!!
hello brendan~ thanks for the heads up! technically speaking, english is my third language, but the singaporean education system labels english as the first language, and mandarin as my second language. so yea, i think i did quite a good job making my 3rd language presentable enough! hehe!
you’re most welcome as usual 😉 i still had significant rashes during month 22, so it’s not abnormal for you. if i remember correctly, your flares are mostly restricted to your face, right? it’s good and bad at the same time, i hope you can try to focus your energies on the good side, that will sustain your good spirits 😉
Thank you for the encouragement ! I’m so thankful for all skin people who share their stories! I made friends in so many places I would never have imagined. Skin friends who share and care. Exchanging experiences and encouragement is priceless and exactly what we all need.
😉 thanks for the heads up belinda! i’m glad you’re seeing the positive side to TSW! you go girl!!!
xoxo
Hi Juliana,
Thanks so much for your blog. It is such a helpful place to go to find out about tsw. I am also really loving all the positive posts lately, you can really see how your state of mind has completely changed. I am really glad about that.
I used to read your posts in the early days of tsw and it was really tough seeing month after month how little had changed for you. It was at a time when I wasn’t sure that tsw was ‘real’ and I did wonder whether any of us would ever heal!! I am now a believer – what choice do you have?
On a personal level I am 22 months into withdrawal having used steroids intermittently for 33 years. I never flared in quite the same way as you (all over) but it has been low level flare continuously with a few really bad months (month 9-10) where my eyes would weep, were puffy, fingers would crack and I had bad blotches on my chest and neck. I’m going through this for the second time now and it is tough, probably mentally more than physically.
Your thoughts about depression are probably what resonate with me the most having suffered terribly at times. Now that I am comparatively better I notice that my negative thoughts are not as uncontrollable as they once were. But I think I have you to thank for that – knowing that one day when all this is over, I will be more on an even keel is a thought that I hold onto.
God bless – I do wonder whether he is inspiring your ‘brain farts’ as he knows there are people out there like me who need to hear the good stuff too.
hey tina!!! i figured my blog was a really bad place to be in back then when i was still flaring endlessly. who needs to know about my endless sufferings really? the thought that one never heals from TSW is daunting and horrifying.
thankfully, i now have some results to show to the world 😉 i think a lot of us have been in that stage before, especially if we were one of those who started TSW when it was still a pretty new idea in the WWW, since there wasn’t much people who have made their healing available to the mass.
i agree with you that it’s probably more mentally taxing for you, this is often the case for chronic conditions.. 33 years is quite a long time 😦 but you’ve already made it through 22 months, i just hope that the for the duration of the remaining time that you require to heal, you are able to function like you used to. that sort of makes time pass by faster.
i think pain brings about negative thoughts, it’s just human nature (unless one is a masochist?). i’m glad that you’re no longer that negative!!! push them away and make space for the better thoughts 😉 on an even keel eventually? i assure you, chances are you will be filled with happiness. if a normal mood rates a 60% on a happiness scale back then, your normal mood in the future will rate at least a 75% in the future!
hahaha you are probably right. He does fill my life with a lot of events to inspire me. 😀
Hi Juliana,
Thanks so much for your encouraging and in-depth reply. I really needed the boost today. It’s a bright light I can see from my swollen and weepy eyes 🙂 oh what do these ts do to you!!
Can I ask you whether you noticed big changes in your energy levels throughout tsw? I notice that I go for months being on an even keel, (obviously constantly flaring away in the background) and I can tootle through my day (I have two young children) without being unduly tired. And then just as I’m feeling really good and energetic, I get hit by a dementor type creature which sucks away my energy and leaves me so so tired. I can fall asleep half way through the day despite ten hours sleep in the night. It’s pretty scary, like you’re seriously sick battling norovirus or similar and it can go on for two weeks or more. I’ve read about other people’s low energy but it tends to be at the beginning of withdrawals not 22 months in.
Thanks so much for listening. I find that when I talk about my weepy scalp or other similar lovely symptom it’s hard for people who have never been through it to really understand how truly horrible these crusty wet patches feel or how abnormal these symptoms really are. Enough of my rant today.
Keep up the good work – I think you’ve managed to make something very good come out of a pretty difficult experience.
Tina x
hahaha it was only recently that I truly understand what they mean by “when life give you lemons, make lemonade.”. 😉
regarding energy levels.. HMM. I only remember being in constant low energy (probably due to lack of motivation from the depression) most of the time. I didn’t really notice any energy dips throughout my TSW. however in the recent months, I do observe myself being extremely energetic (waking up from 5-6 hours of sleep) for a week, and then feeling relatively tired for the next week. seems to be a little energy cycle of mine. I’m not sure if it’s related to TSW though.
if unsure, always push the blame to the female hormonal cycle and/or PMS 😉
I think you don’t have to worry about it too much! I’m sure it will go back to normal soon 🙂 plus sleep is the least you have worry about since it doesn’t make you uncomfortable, right?
and I totally understand the feeling you get when you talk to someone who understands exactly what you’re talking about because they been through it. I felt that way when I was connecting with skin friends via the old itsan forum. have me a lot of relief knowing that 1) I’m not alone, 2) someone else understands my pain.
and you are most welcome! it’s my pleasure to bring a little comfort to you all, who are in a place I used to be in. I know. 😉
Thank You for sharing, Love your blog, so organized and you are such a creative writer!
hehe thanks florina! I feel very flattered when people start to compliment my writing! it’s something new to me and I am absolutely delighted. 😉 thanks for showing me your appreciation!
xoxo
‘brain farts’ gotta love Juliana’s ones 😛 thanks for sharing the birth of your blog with us. it’s surely amazing work you have done and inspired us all and i know u will keep inspiring us! can so relate to the depression part. i think in someway it’s harder for me mentally than physically sometimes. even tho it’s really a two-way thing – physicall illness affecting mental health and vice versa, like i’d be totally fine without this TSW crap! i so admire your courage and strength to scour the internet and find the truth behind all this steroid addiction. it must of been hard for you back then with limited resources and we are so so lucky to have you around to guide us in someway and support us. thank you Juliana xxx
aww ahfaye, I hope my brain farts didn’t stink your room up. 😛 I love how you are able to maintain such a high spirit despite this TSW shit. i just want you to know that I really admire your strength.
if you think I’m strong and courageous, let me tell you.. you are more than that.
desperation drives a person to do impossible things! I was desperate for an answer back then, and I’m sure all those who’re still figuring out their TSW symptoms are desperate too because their magical drug isn’t working for them anymore.
it’s my honor to be able to inspire you all! :))))))) and I appreciate you always leaving such happy word of thanks. it means a lot to me, and to know that you are staying so positive. it was something that I couldn’t do last time, that’s why I really really admire you.
xoxo
Short message from me. I always love how well-thought out your posts are. I love reading all of them. I am very grateful that I found your blog. Hope you’re having a happy, healthy fall/winter!
:DDDD thanks san!!!! love it when you all tell me how much you like reading my posts!
i’m grateful you found my blog too, because knowing that i’ve helped one more person in the world makes me feel THIIIIIIIISSSS MUUUCCCCCHHHH better and happier. you guys feed my self esteem, do you know that???