WEEK 77

once i got past the 6 year mark, i don’t really remember how many months its been anymore.
maybe it’s because everyday is about the same to me, it’s like a blur when i try to recall exactly how long it has been.
so this is week 77 (i only figured that out after referring to previous posts), but i’d like to call it..
THE WEEK I FEEL LIKE I’M LIVING AGAIN.how so?
it’s a state where my decisions aren’t bound by the conditions of my skin.
it’s also a time when i suddenly have the motivation to do things again – as simple as wanting to do things, as opposed to how i felt the past 1.5 years.
more specifically, i went out twice to meet two different friends this week.
wow! the last time i went out to meet a friend was in january……?

actually, i’ve been in this “doing” phase since may.
i’ve been so useless (literally) for so long because i kept wanting to do big things like whipping up a delicious meal for my family, or helping my mom out with everything..
in my mind i was doing so much, but none of them translated into actions because those big thoughts also overwhelmed me.
it’s like wanting to fly before i can even walk.
so i broke things down. i forced myself to start doing things, the smallest things that i possibly can, within my means and power.
baby steps!

it began with me helping out with some chores, like laundry.
it was hard at first, because doing laundry requires me to stand by a window, and the sunlight from outside inevitable highlights the elephant texture on my hands (which i’d rather not see, because it upsets me).
i figured, it’s not so much of the actual sensation that my skin feels that make me feel bad, but the sight of it.
what if, i squint my eyes so that i don’t see so much of my skin?
that seemed to help! as such i’m able to keep doing laundry for my family, which makes me feel better because i’m finally useful again.

that was may.
it started out so small, and it slowly enabled me to do more.
it’s that thinking “if i can do this small thing, i can do another small thing!”, and it snowballs.
“maybe i can squint and cook!”, which i don’t recommend unless you are REALLY careful, because having limited vision and cutting doesn’t go well together.

the thing is, the more i do, the better i feel mentally, and the strange thing is..
my physical self start to get better too, albeit things were still going up and down.
but there was a general upward trend within the fluctuations.
i marvel at the how my body seems to respond to my needs, as though it knows how to transform itself accordingly.
“oh, you need your hands for work? ok, i’ll heal it a bit faster so you can do this task better!”
over the months i notice my hands getting decreasingly red, the dryness also improved, and elephanty skin is on its way out.

granted, other parts of my body did get worse during the same period of time, but it bothered me less and less.
i just have this deep feeling in my heart that my body is getting better.
maybe it’s because my appetite is coming back, maybe it’s because i don’t feel cold that easily anymore, maybe it’s because my mood is a more light hearted these days.
i don’t know if it’s due to my mindfulness and loving kindness practice, but my heart is just so filled with love on most days, i laugh easily, i anger a lot less.
i feel grateful again, like i did back in 2013 when i got to go back to school.

anyway, that’s the state of my mind and body right now.
thought i’d share some little stuff that i did this month.


i repurposed a small packaging box into a cable management thing. i was so pleased with myself, and that gave me even more energy and motivation to make a phone stand out of remaining wires that i have.
all these stuff have been sitting around my room for at least a few months, i just never got around to doing anything about it.
but not anymore. ๐Ÿ™‚


i printed out a typography design (on the right side: think less, do more) that i made and stuck it on my wall as a reminder to self.
and, i went to a computer fair at the beginning of the month with my brother to haul a new monitor back.
it’s something i’ve been anticipating for 2 years now, and i finally got it!
but getting the monitor wasn’t the happiest thing that day. it was me being able to be out with my brother feeling comfortable in my skin ๐Ÿ™‚


designed and printed a new “label” for my room.
disclaimer: the tape was there to hold it in place while the glue cures. hahaha ain’t gonna leave it sloppy like that!
i’m not that sloppy anymore, now that i want to do things.

what changed? what caused these changes in me?
my mentality.
i realized if i want things to change, i have to kick-start it within me.

my skin felt like it was in limbo the past 2 years, just never getting out of a low-grade flare all over my body.
not doing anything didn’t change much.
doing something, did.
i didn’t set out to do more stuff in hopes of having better skin, you know?
it’s like my healing is a side effect of being useful.
my original goal was to help out a friend with some chores, or maybe cook together for fun.

i can’t rule out the possibility that my body is responding to my needs, in fact, i’m quite inclined to think that way.
it’s not the first time something like that happened.
when i had to go back to school in 2013, my skin miraculously got much better within 6 months compared to the year i spent staying home doing nothing.
yes, i was on TCM those 6 months, but i’m starting to think that TCM played a supporting role, not the only role in my improvement.
the other part of the equation was me doing things. my body responded accordingly and healed so it can serve its intended function.

i come to that conclusion because i’ve been on TCM for the past 20 months, and my skin was hovering about the “almost healed by not really” line for almost a year.
i never really felt a breakthrough.
not to mention how heartbreaking it is for the months of progress to derail back into another bad cycle within a short period of time, then stay bad for another few months.

but ever since this may, even though things still have it’s up and down, right now i feel like things are better.
it’s a slow progress, which is why it makes it even harder for me to register an actual positive change.
one day, i notice myself no longer avoiding the mirror.
and then, it was me no longer avoiding dim lights (which accentuates skin texture).
one night, i realize my body isn’t as itchy anymore.
suddenly, i can agree to go out on last minute notice instead of rejecting the invitation.
and just today, i realize i can do without my morning shower (if i apply some lotion).
slowly but surely, my skin has lesser grasp on my mind and life.

some people ask me how do i know if i’m healing, i used to say you’ll feel less itchy and all the other physical descriptors.
but right now, i want to add to it – you will want to do things again.
you’ll worry less.
you’ll feel better mentally, more optimistic, perhaps laugh a little easier.
you’ll sleep better, less anxious, less negativity.
you’ll start putting your thoughts into actions, lesser procrastination, more motivation.

i truly believe that one get the body to heal by kicking the start the process.
it’s like growing crystals from a salt solution.
you need a SEED CRYSTAL to initiate the crystal growing process.
or, just imagine you wanting to create a huge snow ball.
you gotta start somewhere right? with a small snow ball before you roll it around to make it crazy humongous.

if you feel like your skin recovery has reached a plateau (by that i mean it’s been more or less the same for more than a few months, or even a years),
maybe it’s time to make some changes.
for me, it was being useful again.

for you, maybe you could get temporary help to reach that state where you can start doing things again.
think of it as using a crutch to nurse a broken leg.
it can help your leg heal to a certain extent, and at that point, you might be able to limp a little bit, forcing your leg to bear some load.
it’s the stressing of the muscles that helps it grow again.
of course, the amount of stress must not be more than what a hurt leg can take, otherwise the damage will outweigh the healing.
but you cannot use the crutch forever because not letting your body do what it’s supposed to do stops it from becoming what it’s supposed to be.

anyway, healing is exponential towards the end.
once you are able to do normal things again, your body will react accordingly to return to normalcy.
that’s what i’m trying to get to.

also, i started moisturizing with cream again back in august. that’s another change i made.
aveeno made me itch, so i stopped moisturizing with creams/lotions for a while.
i did use oils, but the weren’t good enough for really dry skin, as my skin clearly needed water, not just oils that seal in moisture.
i went back to st ives, which thankfully did not break me out in an itch!
i already finished one bottle of the cranberry and grapeseed oil lotion. it’s labelled as “intensive healing”.
it’s not too rich, which is a good thing in my books. overly rich cream might irritate my skin.

everything else pretty much stayed constant: i’m still on TCM, my diet is still 97% vegan, still practicing mindful meditation, still taking some supplements.

last but not least, just a snapshot of my my face and neck looks.
my skin is very thin, so you can see it has a pink hue in it.
still have active rashy areas around my lips and cheeks (which isn’t that visible in photo) that peels every day. also some mild rashes on my forehead.
on a bad day i look like i have a pink goatee.

not included in the picture are my trouble spots on my wrist, my leg, and my feet.
they’re doing their own thing.

my cousin says i look like i want to kill someone when i’m expressionless.
hahaha i was channeling some super model vibe, okay?

now that i did things, i felt like sharing once more, which resulted in this overly long entry.
originally, i just wanted to do a short update on my moisturizing status, and to show a recent shot of my face.
i’ve had that thought for over a week, but somehow i just never got around to it.
but once i start writing, more words came to mind.
thoughts that i’ve wanted to share, but i just never got around to it because i was overwhelmed.
i mean, i have so much thoughts! where do i even begin?

turns out, it begins with me just doing it. typing.

that’s what i am trying to practice.

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14 thoughts on “WEEK 77

  1. Hello Juliana,
    always so nice to read your letters. Your thoughts are interesting to ponder.
    Now you want to do more and think less. Good.
    Physically and mentaly your body needs both to work full out. But you can stand physical illness better than mental.
    In that way you’re doing right now. You try to come out of mental ilness by acting physically and that is your way to survive I think.
    Wish you good things to do so that you more and more can feel life inside you.
    Love from “mother”

    • hi ulla! thanks for your lovely comment as usual! you are right, i acted on my mental issue through physical means! i just want to make the most out of my life with this energy that i have right now, because i know it ebbs and flows, some time later in the future i might want to take a rest again ๐Ÿ™‚

  2. Hello Juliana my love,
    I wish you didn’t have to write these posts but grateful for your courage. My Bella (12) will start year 4 of the TSW journey in November and I think and pray for you often when I look at my girl. What a marvelous resilience God gave her and you. Bella still has flares where the skin looks like it is taking a turn for the worse and all she wants to do is crawl into bed and sleep. Yet she runs in PE even though she will hurt and scratch and suffer later… she will push her studies and keep at the top of class even when there are wounds and scabs open…she still uses her bandana everyday because the hair loss (80%) is not growing back, so I buy her pretty ones. I want you to know again how much comfort and hope your blog brought us in those early days and prays for courage so you can fly everyday…even if it is just around the house. You are not alone in this journey, may the grace and mercy that is abundant in God surround you to reassure you. Praying for you, from Chicago with LOVE!

    • dear shiungor, thank you so much for your lovely comment! it always warms my heart to receive kindness. i’m so sorry to hear that your daughter is still dealing with TSW symptoms. 4 years is a long time.. at the same time, i am very happy to hear that she is showing so much strength. as much as i wish for every TSW warriors to be free from skin issues, sometimes i feel it’s situations like this that make us stronger. your daughter will grow up to be so resilient, you probably won’t have to worry much for her in the future ๐Ÿ™‚

      thank you once again for your kind words. glad to know we all have each other’s support!

  3. Hi Juliana. You talk about mindfullness meditation for TSW help. It is interesting. Can you discuss it more, like do you follow a audio clip guide. Thank alot for this information and blog. English is not my mother language so excuse me mistakes.

  4. Hi Juliana,

    I can really feel you when you mentioned that “this week I feel like living again” as I have been praying to just died in my sleep almost every day. I am currently on my 12th month TSW and also been seeing TCM for past 10 months. Initially my skins recovered in about 2 to 3 months and then another nightmare came. I am experiencing more and new itchy rashes on different parts on my body which I never had them before for every few months. I am currently taking TCM medications and applying only physiogel calming relief lotion on those areas without eczema rashes and TCM cream on eczema rashes. The TCM physician said that I am healing slowly as I have poor digestive system and my skin may be adapted to the cream so I have to apply TCM cream more often. I am feeling despair as my skin will tend to improve for a few days and then it will get worse for a few months. I have been trying hard not to eat things that cause allergy such as seafood, dairy products, nightshade vegetables and heaty fruits but it does not really help with healing. I have spent too much of my parents’ money to be on TCM for the past 10 months and still without much breakthrough. I am thinking to just stop visiting TCM totally and let my skin heals in its own but I am too afraid to go through an even worse situation than now. My mood is still pretty much affected by my skin conditions. Sometimes I feel like I should go out to have fun instead of locking myself in my room the whole day but I am still uncomfortable being outside with my skin conditions. By the way, I do not dare to apply makeup on my face as I am afraid that my eczema on my face will get worse. Do you have any recommended makeup that will not worsen eczema on my face?

    • hey lynn,

      i just wanna give you a hug now. i’ve been there before, i totally understand what you’re feeling. i can only assure you that it gets better with time. also, which TCM doctor are you seeing? would you like to see mine? he’s at gingko tcm, you can google the rest ๐Ÿ™‚

      as for your diet, if you have the time to do the research, do find out more about foods that are good for the digestive system in the TCM point of view (here’s a search term: TCM food to strengthen spleen). i can give you a brief run down – it’s mostly whole grains, nuts, and legumes. common stuff like rice, millet, barley, red beans, green beans, all kinds of beans! just make sure to boil them, chew well when you eat, and try to avoid drinking water 1 hour before, directly after, and 2 hours after meals. it takes a long time to correct a weak digestive system, but with a little patience and effort, it could be done! alternatively, you could also massage certain acupuncture points that is beneficial for the guts. there’s the spleen meridian, and the gall bladder meridian. perhaps your doctor can guide you on this? or even perform acupuncture on you to target those specific issues (if you’re not afraid of needles. it’s not as scary as it looks! it feels like a tiny pinch).

      i understand the feeling of being a burden to our family. i learnt that it’s counter-productive to have those feelings, because they make me feel bad. and that doesn’t help with recovery at all. i have since practiced more positive mindsets – to receive their help with gratitude. you must understand that your parents wishes for you to be healthy as well. of course, it’d be best if results visible more quickly, but good things take time. in the mean time, just let them know how thankful you are to have them as your parents. i’m sure as a parent, nothing beats feeling appreciated by their children! let’s just make the best out of our current situation, ok? ๐Ÿ™‚

      lastly, i also always tell myself “i should be doing this and that..”, which honestly, only makes me feel bad when i didn’t end up doing it because wanting to do something doesn’t equate to feeling like doing something. my advice to you is to take it easy, and let it be. you will go out and have fun when you feel like it! no need to penalize yourself any further for not doing things that you should. you are your own master, and you get to dictate what you want to do. i know this TSW thing is extremely hard on the mind, as such, i hope you manage to find a way to strengthen your mind. mental strength is so important in helping us get through difficult times in life.

      i also don’t dare to apply makeup to my face for the past 2 years! boy do i miss doing makeup!!! BUT, i am able to put on some lipsticks, so that is what i will suggest to you too! assuming your lips aren’t affected! wear something dark, like a MLBB but darker shade that compliments your skin tone. it really helps to tone down the redness on our faces visually! plus, any lipstick (even waterproof ones) can be easily removed with some vaseline. and if you’re feeling up to it, use some water-removeable eye liner (i like heroine make. dolly wink is great too!), as well as water-removeable mascara (dolly wink mascara is awesome with heated lash curler!). as you can see, i’m not actually applying anything directly on my face! hahaha! i wouldn’t recommend putting anything on your face because, even if you don’t react to the makeup, you might react to the makeup remover. all that wiping and scrubbing might not be the best thing for fragile skin right now. but if you REALLY want to, i heard dermablend is pretty good.

      i hope you feel better soon. don’t lose hope! we’re all here for you!

      • Hello Juliana,

        Thanks for sharing your journey! I come here from time to time for encouragement to continue fighting this TSW ๐Ÿ™‚

        I just passed my 12 months mark, I think my skin has improved but still not healed yet. I am planning to see a TCM to improve my overall well-being and hopefully a boost to heal faster *fingers crossed”.

        I am in Singapore too and are you seeing Dr Chai Tat Fatt at Gingko TCM? Do you think acupuncture helped your healing? I would not be able to take the herbal medication as I have food allergies (too many!).

        Thank you again for being so kind to share and encourage us! xx

      • hello jossie!

        congratulations on making it to the 12 months mark! you’ve come a long way!

        and yes, i’m seeing dr chai at gingko tcm. i feel like acupuncture helped my healing in a way i can’t explain! but i only did it for a short period of time, and my skin did get worse after the initial improvements so.. ๐Ÿ˜› i think you can discuss your food allergies with the doctor. if you have plenty of allergies, it sounds like you have a bigger underlying issue (that is your gut) that needs to be addressed. dr chai will guide you along!

  5. It is really nice to see such an encouraging post. I am glad that you feel like doing things again. I found myself in anxiety mode when I see things that I should do in my house and look after my family but I keep avoiding these duties. It makes me anxious because I know I should do things like mopping the floor, dust the house, cook meals on time, etc. but for some odd reasons, my mind is telling me to avoid them but yet I felt really guilty for not doing them. I ended up sitting and watch Youtube all day, just wasting my life. Up to a point, I don’t even enjoy the videos but doing it for the sake of avoiding house chores. However, in the past two days, I started to do some organizing work at home. Going out to do dance exercise with a group. Seems like my mood is getting better and liet anxious. I agree with you, doing nothing or laying in bed does not change a thing but doing small task helps to change the mind. I hope this good feeling will continue. I am sure my good mood is due to my skin doing better and a lot less itchy. Someday I even feel comfortable even the skin is still very dry.

    I am 13 months in TSW, I am still on UVB phototherapy. I have been on the therapy since Mar 2017. My dermatologist wants me to continue doing it 3 times a week until Jan 2018 but I am cheating by doing it only twice a week since the beginning of Sep. I am hoping to get off the therapy slowly and let my skin heal naturally by itself. I hope my skin is not depending on the UV ray. Right now, I can shower without any itch or pain but I have difficulties going into a shower which is more a mental issue. I am looking into getting professional help to put my mental health back in order. I hope I will continue to improve. I too hate to look into the mirror because I lost almost 2/3 of my hair if not more, the skin colour is so dark from the UV therapy.

    Last but not least, I really enjoy reading your posts and they help me a lot. When I see your negative posts, I pray for you. When I see an encourage post like this one which is so positive, I praise the Lord in joy and continue to pray for your healing. 6 years is not a short time. You are so brave. All the best to you in your healing!

    Loretta

  6. Hi July!

    Nice to hear things are slowly getting in place for you, i also experienced this effect of working/doing resulting in a better reaction from my skin, just for my fingers though (on a hindsight, i didn’t gave the proper importance to this as a factor before as now, after reading your post).
    On a side note: I consider myself to be organized, but the organization you put in your room takes the word to a whole another level!

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