let it go

last week i was going through yet another cycle.
no big deal, just some minor rashes on my arms and legs living the time of their life..
they’re dying down now, and will not be missed.

i didn’t feel too bothered by that.
after going through the manic phase of trying whatever i can do change things,
only to find out things are actually out of my control,
i’ve learnt to let it go.

trying to influence things out of my control is a futile effort.
initially it made me feel empowered, like.. I CAN DO THIS! I CAN CHANGE THINGS AROUND!
well, looking back, it’s a false sense of empowerment.
when i realize nothing changed because of what i did, i felt twice as bad.

is it worth it?
i don’t think so.
that’s why learning to let go is so important.

letting go is freeing.
giving up control rids you of responsibility.
religious people say “you already tried your best, now leave the rest to god”.
if you don’t believe in a god, then “things are as they are” works too.

letting go isn’t the same as giving up, even though the action one take is often similar.
the difference is in the motivation.
you give up because you feel hopeless, frustrated, angry even.
but you let go when you’ve come to terms with reality – the inability for us to have complete control over every single aspect of our lives.
you’re at peace, perhaps even happy, to finally let things be the way they are.

the need for control in itself isn’t bad.
you need a certain degree of authority/autonomy to get things done.
yet, we often forget that our range of control is very limited, as compared to the vastness of this world.

people often say the only thing we can control in life is how we respond to it.
even then, we do not have complete control of ourselves, let alone to control others/events.
we can barely control our own emotions, which has a weather schedule just like nature.
sometimes it just happens.

i think i’ve given up almost all control over my health,
and by that i mean i no longer try to force my health to align with my ideal within a stipulated time frame set by yours truly.
we can’t have it all.

by seeing my TCM doctor, i put my health in his hands and let him be the captain.
i stopped reading literature trying to figure out what’s wrong with me, or what i can do.
i continued my new plant based diet, but no longer using it to directly affect my skin. i’m continuing on because this diet makes me feel happier as i have peace of mind that i’m not eating unhealthy animals.
i continued taking strolls as a light form of exercise, but not because it benefits my heart and lungs. i just enjoy the night breeze, and the blurry night lights (as i don’t wear my glasses).

letting go allowed me to be peaceful.
and peace of mind, as i’ve come to realize after battling TSW for 6 years, might just be the most important factor in healing.
anger is my mom telling me to do the chores, i do them out of love and respect, but she’s just going to see it as me following her orders.
peace and love on the other hand, it’s me offering to do the chores for my mom because i know she’s tired from work, and she knows i’m doing it because i love her.
both elicit the same result, but one leaves me grumpy and feeling unvalued, and one leaves me feeling like a god damn saint.

my favourite phrase now when a new rash pops up is
“we’ll see what happens!”.

it might be just me, but i feel like my skin has been calming down even more after i consciously remind myself that i’m actually ok with the way things are.
that encompasses a lot more than what it seems – it means i love myself, i love my broken skin, i love my healing body, i accept it for what it is right now, even though it’s not where i’d like to be.

i definitely don’t feel this way when my skin was way worse.
but now that it’s not as bad, it’s easier to love it.
and maybe that’s why i feel like things have been getting even better.
that self love might have helped ๐Ÿ™‚

letting go is a process and not an over night thing,
especially when it’s intangible stuff we’re talking about.
it isn’t as easy as taking out physical trash – out of sight, out of mind.

something to think about.

[brain fart] happy to smile

there are days when i find it easy to laugh,
and days that i just can’t find my laughter even when i saw something funny.

as of the past few weeks, i noticed that whenever my lips are going through a cycle,
by that i mean drying out, tightening of the skin, shedding, and cracking open,
whenever the ability to smile is limited,
i feel worse.

even looking at cute animal photos and videos doesn’t ellicit so much as a giggle.
what’s wrong with me!?

then i remember this little fact that said the act of smiling can make you feel happy.
surprising isn’t it?
usually, we smile when we feel happy,
but the opposite is true too!
we can influence our emotions with our physical behaviour.

unfortunately, the area around my lips happened to be areas i used plenty of steroids on.
elomet in particular.
i think it’ll be several more cycles before it will get back to normal.

till then, i’ll try to savour every moment when i can actually smile.
i can get away with 1 or 2 days of flexible skin near my lips that allows me to smile.
i’ll just have to smile harder during those days to stock up on my happiness level i suppose?

if it works that way, that is.

 

[brain fart] how to not feel depressed

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i think i’ve received this question before, but i haven’t gotten a chance to really address it properly in a blog entry.

how do i stay strong despite all the bad times i have to go through?

to answer the question simply,
i’d suggest you pen down the list of positive changes you’ve observed in yourself ever since you quit steroids.
it can be simple stuff like..

i appreciate my family so much more than before,
i no longer take things i have for granted,
i am thankful all the fucking time such that i can tear up any time any where,
i am more empathetic than i ever was,
i’m not that snobbish bitch anymore,
i lead a healthier lifestyle now that i know what to do.. etc.

once you complete the list, you might be able to resonate with what i’m about to write. Continue reading

[brain fart] being kind and happy


it’s more important than you might think.

i’m in one of those pensive moods lately, it’s sort of the side effect of feeling moody.
not every thought gets to be written down and shared with people,
so this thought came at the right time because if it hit me a week ago, i’d be “meh!” and let it slide into the depths of my mind.
thankfully, i’m feeling a bit more motivated to get things done this few days,
so here goes.

as i was surfing the internet on my laptop,
i randomly look down at my hands that are laid out on the keyboard.
i think it’s a subconscious habit to always take a look at my hands and scrutinize my skin (which explains why i always felt bad the past few months because my hands looked kinda bad),
and it only surfaced to my awareness just now because i noticed how beautiful my skin looked.
for once, i’m not upset after looking down! i didn’t know i can NOT feel upset until just now!
it’s not perfect yet, but they look so much better than before.
lesser wounds, lesser redness, skin isn’t as elephant-y.
it actually feels smooth and soft again (i did use a moisturizer, as i felt it’s the right time to use it now).

what i did next made me think i’m borderline crazy.

i looked at my left hand while caressing it with my right hand as though it’s a little puppy in need of love.

“you look so good! you’re doing so well! keep up the good work!”

then i looked at my right hand.

“you’ve done an amazing job healing! keep up the good work!”

as i touched it with my left, i looked at it lovingly before holding it near my lips and giving it a kiss.
i know, i know. it sounds dramatic as hell, but i really did that! haha!

and then i smiled to myself and thought “how wonderful and amazing is my body? you’re doing such a good job healing from the damage i’ve dealt, yet i have been undermining your efforts by thinking you’re not healing fast enough.”

i wrapped my palms around my cheeks (they’re currently going through another cycle), gave it a light pat of affirmation, closed my eyes, and took in a deep breath.

and i smiled again.

being kind to myself elicits a surge of good feeling, and it puts my mind in the right place that aids healing.
it takes away stress and channel more positivity into a difficult time like this.

surely, you’ve felt unappreciated before in your life,
that didn’t feel good, right?
if my body had feelings, it probably felt like shit because i neglected the fact that it’s working over time to recover.

just because i’m not seeing progress on the surface doesn’t mean it isn’t progressing!
“no observable changes” is not the same as “no changes”.
even though other parts of my body might look worse, focusing on what’s getting better worked really well for me.

you really have to experience yourself, it’s cathartic somewhat.
it might be easier to imagine your body and skin as something adorable.
in my case i really felt like i was speaking to a cute little puppy.

love yourself, and feel better.

xoxo
juliana

p.s. photo of my hand over the month


click to enlarge to see the details, you can zoom all the way in!

[brain fart] when my guts rule my feelings

would it be too far fetched to say that our guts can impact our feelings and emotions?
it might sound crazy at first, but the more i read into it, the more the two appears to be related.
it’s called the gut-brain-axis.

the first time i came across this idea, i was reading GRAIN BRAIN by david perlmutter.
by now i’ve forgotten the proposed scientific mechanism relating the gut to the brain,
but the general idea stuck with me – the idea that eating wrong foods for you can play some nasty tricks on your mind.

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i remember the first time i tried going on a low carb diet (late 2013?), i had a lot more anxiety issues than before.
i’ve never really felt that way before, so i didn’t know it was anxiety at that time.
they hit me like a bat to my head, bringing my positive outlook down to the ground with it.
i’m normally a positive person who thinks the future is filled with opportunities,
but those dark and bleak moments filled with uncertainty are coming at me increasingly over the months i continued on the diet.

i don’t know what an actual panic attack is like,
but there was once i suddenly feel like my future is doomed (for no apparent reason),
that everything i’m doing right now is meaningless,
my heart rate rose, i’m restless, uncomfortable with my surrounding (which was perfectly fine just minutes ago).
i tried my breathing exercise but it didn’t seem to work, so i just tried to let it pass.
thank god it did.
it was a strange experience, because i’ve never felt anything like that before.
is that how it’ll feel like if dementors kissed me?

i never had another episode of whatever it was again.

==============================================

there was also another time when i was talking to my then bf,
he was talking about how the future might turn out to be – the death of the lower income group because living will become so expensive in the future.
the normal me wouldn’t feel much for that sentence because being the positive person that i am, i know there will surely be ways for them to survive. if there’s a will, there’s a way.
but the overly worried me was so affected by what he said.. i pictured myself drowning in the sea because i’m not able to afford a boat.
what the hell!? that wouldn’t come to my mind normally at all!
i felt so upset i told him i don’t feel like talking and ended the call, also something i never did because..
i have always enjoyed and wanted to speak with him then.

i lived through many tiny episodes of self doubt and uncertainty about the future during that period of time.
at that time, i thought it’s just mood swings, PMS, and you know.. everyone has a healthy level of self doubt right?
sometimes i thought i was moody because i didn’t feel like my skin is doing well.

===============================================

lately, i realized that the relationship don’t always hold true.
bad skin don’t always result in negativity.
even though my skin was shitty the past month, i never had those fears about the future.
i was upset, but not depressed.
and i don’t self doubt any more than usual.
in fact, my outlook is more positive than ever.

i didn’t feel like there’s a black hole sucking away all my positive energy away, whereas in the past, there was no way of escaping a negative thought no matter how hard i try to think positively.

what’s more interesting is, i think i can predict what’s going to happen to my skin based on the frequency of my anxiety attacks.
in september 2015, my skin was pretty good. probably the best it has been in the entire year.
but in the same month, i started having those attacks a lot more frequently,
almost once every week.
i passed it off as PMS at the very beginning, but things don’t add up.
i can’t be PMS-ing for the entire month, can i?

by now, the nature of my anxiety attacks have changed.
it’s no longer me fearing about the uncertainty of my future, but rather..
self doubt and negative thoughts taken to the next level.
like every trigger will just bring up the worst possible scenario in my mind.
i know there’s a devil living in the empty spaces in my reality, and it has upped its game by 10 folds.

for example, if the guy you like doesn’t respond to your text for the entire night,
instead of thinking that “oh he’s just busy” and getting on with whatever i’m doing, i automatically think “he’s with another girl right now” and i proceed on to feeling like shit and wallow in a downward spiral of bad feelings.
the thing is, I’M NOT EVEN THAT KIND OF GIRL WHO WORRIES ABOUT THIS KIND OF SHIT NORMALLY.
i was NEVER insecure or needy like that.

i know it’s not about my self confidence either, because my skin was fine at that time,
which guarantees a healthy level of self confidence for me.

no matter how i try to rationalize my thoughts, i just can’t figure out why my mind had that tendency to go to the worst possible explanation and making myself miserable in the process.

i’ve tried meditation, which helped me by being more conscious of my feelings,
but it didn’t stop them from coming.
acknowledging my feelings did help me come to terms with it so it can pass by faster though.

anyway, my mental wellness wasn’t that great in september and october.
i catch myself being controlled by the devil in my mind way too many times, and there was nothing i can do despite being a positive and confident person.
i know something was wrong with me because it’s a deviation from the norm.

and then my skin took a bad turn after october.
i guess the anxiety issue is just one of the symptoms of a compromised gut, just like how my skin issue is a symptom of a bigger issue.
i don’t remember much about how my gut health was like back then, but i know i was very gassy, which isn’t a sign of a healthy gut.
the relationship here is this: the gut will affect the mood and auto immune system.
so if my mood wasn’t normal, my gut probably isn’t, and of course my immune system is out of whack too.

==============================================

i want to improve my gut health,
on top of eating more vegetables (which i have been skimping on lately) and lesser meat (i feel like i don’t digest them that well) so that i can feed the bacteria in my gut,
i also began drinking ACV and taking probiotics again.
i’ve done ACV and probiotics before, but i never felt any significant changes back then to be honest.
maybe i wasn’t looking at the right place to observe the appropriate signs.

this time round (i’ve only been on the probiotics for a week),
i do feel a difference in terms of the amount of gas, and the quality of it.
TMI: it doesn’t smell like undigested food.

i’ll try to stick to it for as long as i need to because i’m not just doing it for my skin health.
i’m doing it for my mind too.
a healthy gut means lesser inflammation and auto immune problems too, so i really have nothing to lose.

looking back, there were experiences that stood out to me as evidence that the gut-brain-axis really do exist,
but reflecting on my past after i’ve read about such a relationship means there may be a case of confirmation bias.
whatever it is, i’m just sharing my personal experience with anyone who might identify with them.

did you notice yourself feeling more anxious/negative/depressed?
if you experience those feelings even when your skin appears to be fine, it could be your gut.

xoxo
juliana

[brain fart] lifting my own mood

IMG_6787
this is what i keep telling myself.

finally got around to sit down, settle my thoughts and feelings, and to write something down after my they condensed into words.

i just got back from HONG KONG after spending almost a month there,
i gotta say i’d be a lot happier if my skin was more stable,
but life says no and i just have to deal with it.

there were many times when i just felt like holing up at home, resting because not only is my skin unstable,
i am constantly feeling tired even after getting 7 to 8 hours of sleep.
and i don’t know what’s wrong with me, but i’m no longer impervious to the slightly cooler weather in hong kong.
i used to find 18 degrees C to be really comfortable, but now i feel cold in temperatures like 22C.
my hands turned ice cold that day when the temperature hit 16.
what the f, i used to find hong kong’s pre-winter weather to be extremely comfortable!

back to my monologue,
despite feeling lethargic and not as hyped up as i wished i were,i didn’t allow myself to waste too much time while on my holiday,
after all i was supposed to enjoy my trip, right?

so i’ve been reading a book lately (the paradox of choice), it’s about the detrimental effects of having too many choices in life.
it brought in a lot of behavioral economics/psychology theories,
one that stood out to me was about how humans usually tend to think of situations as “it could have been better”, which resulted in plenty of dissatisfaction and inability to feel happy about what they already have.
i caught myself doing that, so many times!

“if only my skin was better”
“my skin was so good just 2 months ago, why is it looking worse right now?”

why not look at it from the other direction?

“it could have been worse”
“my skin could be oozing right now but i’m not!”
“wow, luckily my skin didn’t crack like it used to!”

and suddenly the tables are turned and i don’t feel that hopeless anymore.

this is for anyone who needs a little push right now ๐Ÿ™‚

i was chatting with one of my friends (hello brendan) just yesterday,
he was telling me about how most of the other TSW “vetarans” stopped updating their blogs.
i wish – and i wholeheartedly do – it’s because they’re fully healed and have been too occupied with their new found lives to keep coming back to update about their normal lives!

as for me, as i’m still trying to figure out my own eczema,
i think i’ll be here for a little longer.
and even after i heal, you’ll still hear from me.
that’s a promise ๐Ÿ™‚

and oh, i forgot one thought that i had..

“i’m so glad i can still smile right now without cracking my lip area!”.
that kept me smiling whenever i can, because i know it’s a gift that i can easily take it for granted if not for TSW.

rest well and heal well everyone!

p.s. here’s a photo of me at stanley in hong kong ๐Ÿ˜€
skin was calmer that day and i’m very happy!

IMG_7416

xoxo
juliana

[brain fart] fighting alone?

i do not know how to begin this entry when there’re so many thoughts in my mind.

i’ve just went through another week of crazy skin changes, just 5 days ago it was a little oozy all over, skin just falls off me in the shower, leaving me raw for an entire day afterwards, and don’t get me started on the moisture i feel when i lie down in bed. it feels too cold if i don’t cocoon myself in my blanket, but it feels so hot, moist, and itchy (especially around joints) once i feel that the temperature is right. waking up 10 times a night to scratch, only to have my newly formed skin rub off me like rubber dust, and then regretting the next moment because now my arms are raw and moist too. and shit, did i scratch my neck and back too? holy crap, now i’m going to wet my bed for real. and waking up to that oddly familiar stench (from the seeping bodily fluids) really isn’t the best way to start my morning.

but things change fast, really fast. while it felt like it lasted a life time when i’m actually in the moment, it actually only lasted 3 days. actually, 2 days, and the 3rd day it was already getting better. by now, there isn’t any more oozing. my skin still sheds, but i don’t have raw skin waiting for me.

i probably chanted “it’s all a process, it’ll be over soon” a thousand times during those 2 nights. it’s usually most unbearable at night, feeling hot and bothered (literally) for the wrong reason hahahaha!

i sat myself down today to write about some thoughts that have been running through my mind lately, since i’m feeling much better now. at least my mind is in the right space.

first thing first, i started this blog to document my progress for my own reference. somewhere along the way, some people decided to join me on my journey and watch the process unfold.

i still document for myself, but sometimes i find the need to answer to everyone else who’re looking up to me as the hope and light they need to see themselves through their very own TSW journey. i don’t see that as a burden. that’s something i take pride in doing – lifting you guys when you all need a helping hand, a guiding star in the darkest nights, an anchor in the stormy sea.. you get the drift.

i enjoy being able to reassure others that they’ll heal, because that was probably the only sliver of hope that kept me going back then when information on TSW was so scarce. there wasn’t even that many scientific journal that documented the healing from TSA/TSW. it’s difficult to stay grounded when there is so little proof, but i chose to believe in it anyway. dr rapaport and dr fukaya were two pivotal person in my TSW journey. even though i didn’t get their direct support, they were my anchor, and i believed and stuck through it even when people around me didn’t really believed in what i was doing.

if not for them, i would have lived with the idea that i’ll have to live with bad skin forever. FOREVER. that is a very miserable state of mind. i’m so glad i wasn’t in that place.

going through TSW wasn’t easy when i have to convince people why i will never use topical steroids again. going against the convention almost made me a crazy person. which was why i shut myself away from those friends who question my choice.

i would have felt very very alone if not for the ITSAN forum. being able to connect with other skin friends reminded me that i’m not in this alone. i’m not fighting an unknown cause alone. and i’m not crazy for doing something radical, because there are others who believe in the same thing as i do. i haven’t been in the forum for a really long time, but i never forget the first few skin friends i made there when the forum was new and small. they provided me with tremendous support that not even my friends can give me. it really takes one to know one.

i used to get offended when people question my choice, because they make me feel like i made a decision without thinking thrice. my self-defense mode is switched on automatically and i’m ready to fire. if not for TSW making me so sick of explaining my stand, i’d probably lost a lot more friends than i can imagine.

thinking back, they have every reason to cast their doubt on me, because i did make the stupid decision of applying topical steroids for 8 years, all over my body. and they probably meant well, right? there’s really no point in choosing to see the situation in a negative light, because it’s only hurting no one but me.

even though i know their well intentions, i still feel a pinch when they doubt me. it’s just like.. the following optical illusion.

you know the lines are the same length, but you still can’t help but see (a) as the one with the longer line!

i am fully aware of what kind of responses i’ll get when i share news of my latest flare ups, especially my month 48 update with my incredibly swollen face. while most of y’all are supportive and encouraging (thank you SO SO SO FUCKING MUCH, you guys shine like the brightest star in my sky ๐Ÿ˜€ ), there’s always going to be some concerned souls who will raise some skepticism against my thoughts and beliefs.

nothing new, isn’t it? it’s me against the world all over again.

just that this time, i’m more alone than before because i’m no longer believing in the same things that most do (that i should just sit here and do nothing about my skin because this is TSW and not eczema). the idea that what i’m experiencing isn’t TSW is shocking to some, and hard to stomach for many.

i thought of escaping and not updating my blog for a while, until i’m healed again. i thought of hiding and not replying to any comments. i thought of fighting this alone until i have results to prove that my hypothesis is correct.

but i realize that’s not going to help anyone. and hiding isn’t going to solve any problem. it’s probably a lesson that i need to deal with in life, because there will always be people who will challenge your belief. it’s not a bad thing even if it hurts a little, especially during a time when i’m more vulnerable than ever. it forces me to think in a different way, to re-evaluate my choices and decisions. in a sense, it actually helps me come to a better decision because everyone has blind spots, and it takes a person from another perspective to point that out to me.

if i can get myself out of my shell to face it, i think i can face any other opposing thoughts in the future.

so skeptics, thank you for bringing up thoughts that haven’t hit me. thanks for helping me see a fuller picture. BUT, please be gentle with me as you point out my blind spots, because it still pinches me ๐Ÿ˜›

and to my lovely skin friends who have been nothing but supportive, constantly telling me how inspirational and strong i am, thank you for giving me the affirmation i need to keep going. i appreciate every little nice support i can get because you all know how precious they are when you’re doingย  something that don’t garner lots of support. scarcity makes thing more valuable ๐Ÿ™‚ law of economics!

as for me, i’ll continue to trek this path that most don’t agree with to explore new territory. it takes a lunatic to do something unconventional, something against the flow. but it’s even more stupid if i keep repeating the same thing (of doing nothing) and expecting a different result.

you know what, maybe i’m not fighting alone after all. it just feels like that because i focused too much on the tiny skeptical voices, and failed to realize the louder supportive voices. time to refocus my attention ๐Ÿ™‚