what happened to time?
there was a point in time when i thought i can’t make it a day further,
let alone a month..
or a year.but here i am, 6 years down the steroid free road.
i made it this far somehow.
6 years ago if you told me i’ll have to spend 6 long years healing, i’d have told you i won’t be able to make it through.
6 years is a long time.
a child would have finished primary school education.

recovery from my last flare in 2015/2016 took a lot longer than expected too.
a friend of mine got married, got pregnant, gave birth to the baby,
and i’m still healing.

the old saying works: take things one day at a time.

i don’t feel like my skin is at that stage where i feel confident enough to start talking about my flare and my recovery.
it’s too soon.
when things haven’t settled yet, i risk bringing everyone on a roller coaster ride together with me,
and it doesn’t seem responsible of me.
i know far too well just how easy one can feel discouraged when we’re going through the thick of it.
seeing someone else who’s 6 years in and skin still isn’t stable yet?
that’s one way to chip away at our already weak faith.

on the other hand, i can not neglect to see how well my skin has healed as compared to a year ago,
when it was at its absolute worse.
rather, i don’t want to neglect it.
i want to give my skin and body the recognition that it got better.

just to give you an idea of how my skin is right now.
be sure to click and enlarge the photo because it looks like it’s perfect from a distance 😉
my skin is still fragile, and you can easily see redness if i overheat, or when blood gushes to my face.

Click to enlarge!

might have a thin layer of vaseline on my face, hence the slight shine.

Click to enlarge!

Click to enlarge!

if i compare my skin to when it was normal, i’d be disappointed.
that’s why i remind myself that not too long ago, my skin once looked like the photos below.
really hard to believe how my skin can heal given time. and patience.

Click to enlarge!

from bad to not too bad.

Click to enlarge!

to very bad, then to pretty good.
the photo on the right is probably from around august last year, when i had a calm period.
things then went down from there.
it’s really full of ups and downs.

Click to enlarge!

my arm was once so bumpy and rashy, you have to really zoom into the bottom left photo to see it underneath my skin.
also that oozy wound that took 3+ months to heal up. IT HAPPENED TWICE.

Click to enlarge!

feet, sometime last year i think.

now you see why i have to give my skin and body a pat on their back?
they did a shit ton of healing over the years!

my recovery feels different this time round, compared to the one in 2013.
both times i had TCM to help me,
but this time things are moving along slower.
i also observed so much more new stuff that i’ve never felt before.
things like anxiety, loss of self identity, confidence, lethargy.

nothing ever stays the same, i guess it applies to my body as well.
it’s clear that my body function is different from a few years back.
could that be why i’m taking a longer time to make the same progress?

what took 6 months now takes 1 year.

nonetheless, i know i’m heading towards healing.
i keep telling myself: TIME.
it’s to remind myself that with time, everything will be healed.

the progress may be slow, but it is healing.

through the series of ups and downs, i’m getting better after each of the cycles,
even if they take 3 months to get better.

i see my arms and legs clear up for a few weeks before slowly descending back into a cycle.
it is frustrating. but i can’t stop it from happening.
each time i wonder if this will be the last time.
i can sort of tell it’s not the end yet, because when my skin was somewhat clear,
it’s still not normal skin yet.
i just hope for that day my skin is finally back in its normal form, where it can protect me and function properly.

i know it’s working very hard to achieve that,
that’s why i’ve been showing gratitude to my skin and body for fighting this long war.
it’s a marathon, and needs all the love it can get to keep going.

learning to love myself (not in a narcissistic way) is a bonus gift i got from dealing with the flare the past year.
along with kindness and compassion.
it’s more about accepting things for what they are, and allowing them to exist even if i don’t want to.
to become more tolerable, in other words.
it helped me deal with some monsters within me.
i can breathe a little easier now, putting behind the hate and anger i used to hold inside me.

and i feel better too. 🙂

looking forward to the day my skin is healthy and strong once more.
i think that day isn’t far away now.

also looking forward to the day i’m in the “after” part of recovery, so i can share actual before and after photos,
where the after is stable, healed skin.
we all wanna see the before and after,
but no one wants to be stuck in the middle of the seemingly endless process.


9 thoughts on “HAPPY 6 YEARS

  1. I’m almost 15 months TSW and in an “anniversary flare” right now. I considered myself 97% healed but now feel more like 60%. Like you, the rashes love my neck and chest. They are creeping up my shoulders, down my arms and really make their mark on my right hand–just for all the world to see! This flare brought rashes above my jawline and onto my cheeks, which marks the first real facial symptoms.

    I’m sick of it. My anger gets so bad sometimes, I want to stab something. (I know! The horror!) I’m happiest in the comfort of my house where I have control of my environment. A trip to Japan during my flare was disastrous because of my discomfort, although I enjoyed seeing my husband enjoy himself. I’ll have to cancel a trip to the mainland at the end of this month. These trips were booked when I was 97% and never dreamed I’d flare again. You’re right about taking one day at a time. I tell myself to just get through the morning while I’m at work. Lunch is spent at home trying to relieve my skin. And then, I count the hours till it’s time to go home for the day. I have my skin routine that I’m sure you and all the other warriors live each day. In fact, it’s now time for my epsom salt bath…so nice to hear from you as I’ve been following you since my TSW 01/20/16. You’re getting there, Juliana, slowly but surely. You’re in my prayers and hugs to you!


  2. What a wonderful courageous positive post. I understand as a mother who sees her son in year 3 of steroid withdrawal and the same patterns of skin trauma – what else can I call it?
    I think of all you (mostly) young people who are going through this suffering and want to say to you all ‘ stay strong, face this part of your life with courage and live life to the full as much as you can. There will be an end to what you are going through.’ You are wonderful amazing people all of you.

  3. Bascially, I’m the same with you that withdrawal about 6 years. Since the normal withdarwal reflection is gone from me( Red skin), apart from the steriod withdrawl, I’m now more concern about the bad hibits to causing the my bad skin. Mouth breathing is what I’m trying to avoid and. My skin is well at night comparing after I wake up. The water is non-stop blowout while I sleeping with mouth breathing. You may try to avoid it.

    • hey there! congrats on making 6 years too! it’s a long journey eh? fortunately I do not have a mouth breathing problem. I’m sorry you are dealing with that! do you happen to have trouble breathing while asleep, that resulted in your body making you breath with your mouth instead? perhaps if you can treat any underlying conditions that led to your mouth breathing, you can eliminate that completely!

  4. i am very happy for your healing
    u are a very strong girl
    turn ur pain into light to shine on the people who is still suffering from TSW
    it’s a huge ,beautiful blessing for this world
    thank you very much!!!!

    • thanks for your encouraging comment Andy 🙂 being able to share my experience, and in the process, be a glimmer of light to the rest, has been the reason that allowed me to stay sane even when I was suffering.

      thank you so much for letting me know that my sharing have been able to help you, even if it’s just a little bit. 🙂

  5. Happy Happy 6 years Juliana!
    It is indeed a looooonnng time. You’re so strong to have made it this far ❤
    I hope you continue to heal and feel better, inside and out.

    ps. since you are seeing a TCM, have you heard of the ASHMI? It's mix of herbs that people are seeing a lot of good results with. It's an immune modulation herbal med created by Dr. Li. Look it up, I know the components of it will be very easy to find for you in Singapore.

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