[special post] how to manage TSW v1

i figured this post is probably going to be the best fruit of labour over the past 2 years,
and i hope this will be the most useful post in this entire blog (other than the photos).
here, i’ll talk about things i did to help myself with all the irritating symptoms that arises from TSW.

in life, there are many things that won’t go our way,
like this whole TSW saga.. i feel as if a bloody gigantic meteor landed right in the middle of my life.
i did spend a lot of time feeling sorry for myself, trying to push the rock but it wouldn’t budge,
not accepting what already happened and kept asking god why did such a misfortune occur to me.
when i finally accepted it, i realized i might have to walk around this rock just to get back to my life.
i learnt that instead of complaining and crying over what already happened,
we can put our time and energy to better use by trying to make ourselves feel better during an unavoidable bad situation.
since i know this journey will take helluva long time, the least i can do is to make this journey less uncomfortable.

there was a point in time when i sunk so low, i just let negativity take over me.
i had no motivation to make myself feel better – why should i? i should just suffer and cry till my eyes go blind.
nothing mattered anymore anyway.. i can let the physical pain ride over me again and again.
i totally let myself go, thaaaaaaaaat low.
yea i was that negative. i’m sure you all feel me!

took me a while to bounce back.
i remember i was reading up on depression one day because i highly suspect i was depressed.
(reading through my past entries, i still think i was depressed, luckily i wasn’t suicidal. but to quote a friend, a depressed person wouldn’t know that he is depressed, let along suspect that he is depressed.. so maybe i wasn’t depressed? just very very sad?)
and then there were some suggestions on how to make yourself feel better.
that was when i realized there are actually things i can do to make myself feel less bad!!!

SO, if you can pick yourself up then this post might help you in some small ways.
be it to help you manage the symptoms better or to make you feel better.

if you noticed, the title of this post ends with “v1”, it means version 1.
i know that my list will be non exhaustive, and i really need some help from you guys – to tell me about certain symptoms that i might have missed out so that i can tell you how i dealt with it (if i did go through it at all). just leave a comment below, once i’ve collected enough new points i can draft out the 2nd version of this post, hoping to keep it as relevant as possible.

enough of the intro! here goes:

1. sleepless night(s)
insomnia was my best friend for some time. it always kept me up at night (not for reasons i wished for..) and made my body clock go haywire. i couldn’t sleep during the initial days, and eventually when i can sleep, despite physically living in singapore under the GMT +8 timezone, my body was actually running on the GMT +1 timezone. MEANING, i slept at 6am and woke up at 2pm. my body was in paris i believe ๐Ÿ˜› . anyway, please try to get at least several hours of sleep a day.

what i didn’t do but should have done:

1a) consume anti histamine.
those that makes you drowsy should work (i don’t know about sleeping pills, consult your doctor if you have to). i had hydroxyzine, but 5mg and 10mg were apparently too little for me (and back then i was in the “fuck it, i’ll just face the music” mood and bravely went without anti histamines. on hindsight, it’s quite stupid of me.). i don’t know what’s the upper limit but i think it’s safe up to 50mg (please do your own research, or consult your doctor). PLEASE DO NOT go without sleep for more than 2 days because lack of sleep will make you feel even worse than you already are. also, it somehow makes the skin feel worse too. if you can’t sleep, POP THAT PILL. don’t torture yourself.

worried about being addicted to anti histamines, that you won’t be able to sleep when you stop them next time? solve the problem on hand first. also, you won’t need to take the drug every night. maybe several days a week, for the first month or so.. so i don’t think there’s a huge concern about being reliant on it. moreover, i feel that the insomnia is caused by the cortisol imbalance (which will affect our circadian cycle), no amount of tiredness can induce a sleep in you during times like this. when your internals are back in working condition, you will be able to sleep even if you are addicted to the anti histamine – just tire yourself out. but we’ll leave that to the later part, if you just begun your TSW journey, PLEASE POP THAT BLOODY PILL (if you have already been awake for more than 48 hours).

remember, sleep time is the time when our body regenerates and heals. i don’t think you want to slow down the healing progress, do you?

what i did:

1b) scratch to my heart’s fill in bed.
since i can’t sleep at night, i suddenly had so much more time on hand.. sometimes i just lay in bed and scratch the night (and skin) away, god that felt so good. i never thought that every part of my skin can itch like that. scratching it is almost orgasmic (metaphorically) and its the only way i can get some endorphin in my ย brain.

i didn’t have insomnia for too long (roughly a month if i remember correctly). it was gone before i can do anything about it. i went 2 days without sleep and i was exhausted on day 3.. so i slept. my insomnia wasn’t as bad as others in the forum. the shift in timezone caused more problems for me, but it was manageable.

1c) go with the flow.
i lived many months in the paris timezone. i will wake up at 2pm (singapore time), but laze around in bed until 6pm to wake up for my first meal of the day. i didn’t want to do anything, didn’t wanna ย have a chance to see my skin in day light (that’s why i only got up after the sun went down). i guess that’s the vampire life..! i spend the rest of my time sitting infront of my laptop, watching all sorts of drama so that i have my hands to myself to satisfy my itch. eating whatever i have at home because eating makes me happy, it makes me feel better.

the gist is to do anything that will make yourself feel better. don’t wanna see your skin? don’t look into the mirror, don’t switch on the lights too brightly, sleep all you want. laze around all you want. YOU’RE THE KING. hell, i think we deserve to be the masters of our own lives given the shitty situation that we were in. don’t let people tell you what you should do (HAHAH i just realize it’s very ironic since i’m telling you exactly what you should do to make yourself feel better) because they don’t understand the shit we’re going through.

as long as your family can accommodate to your timezone shift, enjoy it while you can. my mom was great, she will cook a larger portion of dinner so that i can have food to eat at 12am while she sleeps. she’ll then wash my dishes for me in the morning (DISCLAIMER: i couldn’t wash the dishes for very obvious reasons back then. i also love my mother to death because she did so much for me! currently i’m washing ALL the dishes. ๐Ÿ™‚ ).

2. temperature dysregulation
this should be easy to deal with. however, i would also like to bring your attention to the fact that despite i was feeling cold, the surface of my skin actually feels warm to touch. i believe the higher surface temperature has made more water vapour evaporate off my skin. how do i know this? when i stand up from the chair that i’ve been sitting on, i noticed water vapour on the chair. it is NOT perspiration. neither was i feeling warm, in fact i was shivering. also, because i’m laying in bed for so long, my mattress was actually damp. the underside of the mattress was wet (not dripping yet). i believe it’s all from the water vapour that escaped through my skin.

to tackle this particular problem:

2a) always air your mattress or whatever moisture absorbing surface you’re sitting on for prolong period of time whenever you can.
let it stand up so that both sides are exposed to open air. use a dehumidifier if you have one. otherwise, you can aim a fan at it, the moving air will help to remove the moisture in the mattress.

feeling cold?

2b) dress more.
while others are clad in t shirt and hot pants, i’m seen donning a parka, a long sleeved t shirt inside, and long pants. i was feel so cold all the time i was shivering in air conditioned rooms. the 32 degrees celcius sun makes me feel at ease (back then).

2c) drink warm water and have a warm water bag.
i had to be in air conditioned room since i was still in school during the first few months. had no choice but to resort to spamming warm water. i also held on to my hot water bottle dearly as they warmed my hands.

feeling hot?

2d) sit in front of a fan, all day long.
if you can afford to that is.. i don’t really suggest air conditioning since it dries you out. BUT… i feel that the fan dries me out just as much.. i think it’s the skin, nothing to do with the fan or air conditioning.

2e) minimize physical activity.
by sitting in front of the laptop all day. or laying in bed. or in front of the TV if you like to watch TV.

3. dry skin
this comes with a series of related issues. mainly the huge amount of skin fall and the fragile skin that rips easily.

3a) drape a big piece of cloth over your bed sheets to facilitate cleaning.
being lazy like me.. i had an extra layer of bed sheet that is placed on top of the bed sheet. this extra layer is NOT tucked in. it’s simply draping over the bed. why? because i want to be able to lift up the sheet and dust all that skin on to the floor easily. i didn’t see any bed bugs but i know they love to eat our skin. i don’t really want to share my bed with them.. so i had to clean my bed daily. please clean your bed daily too! you can also vacuum daily.

3b) sweep the floor daily (if you have OCD like me).
you’ll be surprised at your own body – “I MADE SO MUCH SKIN!?!?!”. be amused. be very amused! i have skin falling off my body 24/7, my mom once said i leave a trail where ever i go. gotta clean up my mess!

3c) remove things from your habitat as much as possible. seal up cupboards and book shelves, basically any surface that can collect dust.
this was really unexpected.. but a lot of my skin were so small in size, they can float around in the air and fly onto surfaces. as a result, surfaces in my room were BLOODY DUSTY AND DIRTY. it’s not dust, but my skin. it’d be easy to clean if it’s one single surface, because my room was so cluttered with my stuff, all of my stuff got dirtied. therefore, please take precautionary steps to keep your habitat clean. you don’t want to clean up the dirt despite knowing it’s your own skin because it’s simply too gross. i had it on my books, my shelves, my table top, ANY POSSIBLE SURFACES. they even stick onto walls sometimes. i felt like i was living in a haunted house, instead of cobwebs i have dead skin.

trust me, doing this will save you a shit load of hassle. from my very own personal experience.

3d) dim the lights.
in the event you really are have OCD like me, but you just can’t be bothered to clean up your habitat.. i have a very good suggestion for you. if you don’t see it, they don’t exist. ๐Ÿ˜‰ it worked pretty well for me! i couldn’t even see myself very clearly because of the dim lights and that made me feel better about myself already.

3e) shower after waking up, and whenever you need it.
i feel the most dried out after a night in bed. when i wake up i can feel my skin tearing apart. to help with this, you will need courage to step into the shower, take a deep breath or say a prayer if you need to ask for strength and courage.. and turn on that tap to let the water soak through your thirsty skin.

3f) apply petroleum jelly (or whatever doesn’t irritate you) to help the moisture stay in a little longer.
this is quite commonsense i believe? i used petroleum jelly. you can use anything that works for you. as long as they provide you with relief. ๐Ÿ™‚

4. hair loss
i didn’t experiment with shampoos, some said switching to tar shampoo helped.. here’s what i did to deal with the hair loss.

4a) cut it shorter.
so that the chance of weighing the hair root down is lower, also the chance of tugging your hair is lesser now that it’s shorter.

4b) wash it less often.
there’re no sebum anyway, i don’t even need to wash it actually! washing my hair made hair fall out faster.. i think i washed my hair once every 3 or 4 days. sometimes just with water and hair conditioner (applied to end of hair only).

4c) tie it up.
so that you don’t have to keep flipping your hair around. it keeps the hair in place and again, less tugging = less hair fall.

5. ooze
this is by far one of the most troublesome symptom i had, apart from the temperature dysregulation. no only because it feels bad, but it threatens to dirty my clothes and bed sheet and pillow case.. that is NOT acceptable for an OCD person. and the pain of peeling whatever that’s stuck to your skin? no thanks!

5a) place cotton pads over “bloody wounds” to soak up the ooze.
i’ve heard people getting stuck to their sheets and had a nasty time getting out of it. i never had that problem because.. i hate dirtying my sheets, to solve the issue i simply applied cotton pads (those without gauze, the fluffier the better) on oozing wounds. they should stay in place provided i don’t roll around in bed. this way i won’t dirty my bed, and i won’t stick onto my sheet. i used to have them on my knee and calves because i was trying not to soak my long sleeping pants. i also had them on my face because the ooze will drip down my face throughout the night! had to force myself to sleep facing the ceiling. later on i found a better way to keep them in place..

5b) using elastic cotton bandage to hold them in place.
i developed some bloody wounds on the underside of my calves and gravity won’t allow the cotton pads to stay on very well. moreover those areas will be in direct contact with my bed, i need an additional layer of barrier to prevent dirtying my sheets! i wrap my legs up as shown in the photo below, with cotton pad on bloody wounds to soak up the ooze.


image from source.

you can use this method on any part of your body! just remember to put cotton pad on the oozing spots first! it’s important because..

5c) remove the dried and stuck cotton pad in the shower.
the reason why i use cotton pad and not tissue paper or nothing at all is because tissue paper disintegrates too easily when in touch with water. whereas if you use the elastic bandage alone, it will stick onto your skin directly, yes you can remove it after soaking it in water but wouldn’t it be very troublesome if you have to dry your bandages after shower all the time?? with cotton pad, they stay as one whole piece, soaks up water readily and softens as you shower, you can easily remove it from your skin painlessly and throw it away into the toilet (or trashcan, depending on your own preference).

please DO NOT REMOVE THE COTTON PAD WHEN IT’S DRY. that will just be like peeling off a stuck bed sheet off your skin. you don’t want that to happen!

work with your body, don’t work against the situation.

if you have plenty of ooze, then add more cotton pad in advance.

6. perpetual depressed mood (note: depressed mood does not = depression)
i must admit i’m not very good at resolving this issue. but i tried.

6a) watching funny dramas, comedies.
a list of shows i’ve watched (as far as i can remember):
house m.d. (love his sarcasm and humour, and his uncanny ability to diagnose the strangest diseases)
fringe (i had no idea why i bothered to finish this series, but i had nothing to do anyway!)
breaking bad (i love to see how he transformed from a meek nobody to a total bad ass!)
suits (LADIES YOU MUST ALL WATCH THIS SHOW.)
community (would be funny if i have more knowledge of what the writers are actually referencing)
2 broke girls (this hits my funny bone at the right spot!)
the big bang theory (i think everyone agrees that this is a funny show)

and some other korean dramas to indulge my mind in the fantasy world of love and sweetness..

6b) listen to music that i like. it cheers me up a little.
if you like jazz, i recently discovered an online jazz radio that allows you to stream free music.
otherwise, music preference is highly subjective. just listen to things that pleases you!

6c) EAT LIKE THERE’S NO TOMORROW.ย 
this is by far one of my favourite thing to do during TSW. because i couldn’t gain weight no matter how much i eat, i got this EAT-ALL-YOU-CAN pass which allowed me to snack on swiss rolls, breads, buns, biscuits. enormous amounts of rice and vegetables too, also ate alot of meat. basically i was eating like twice my normal food intake. i just can’t feel full! just avoid the well known food that are bad for you.. i didn’t eat any of the fast food or chips. i don’t encourage eating processed food (including the cakes and bread that i ate.. but yea, i ate them anyway. :P).

6d) do whatever that can make you feel happy.

6e) stop counting the days to healing.
don’t put a dead line to healing. it’ll only make you feel worse. instead, you should tell yourself “things might get better in a month’s time!”, that way, you’re hopeful but not setting an unrealistic expectation for yourself. if you have the luxury of resting at home for as long as you want to, let this be a break from the outside world. it will remind you of how much things you’ve taken for granted in the past, and when you are finally back in the outside world, every little thing will be a thrill to have because you have learnt to treasure it. every experience feels like a first. like a newborn again! ๐Ÿ˜‰ you’ll also see the world in a different light. honestly speaking, i do feel like i’ve reborned.. into a better person.

7. self esteem issues
i had to include this one in because i feel that a very huge part of me was broken because i had no more self esteem back then. i wished i found better ways to deal with this.. but all i can do to make myself feel comfortable are the following. i don’t suggest this to anyone because i believe there are better methods out there.. but.. that was all that i can manage.

i have to say i’m still very conscious of my appearance now. so the bulk of the reason for my self confidence now is due to the fact that my skin got so much better.

7a) don’t look into the mirror.
this is self explanatory.
not seeing my skin = i don’t know how bad my skin is = i think it’s not getting any worse.

7b) lying to myself.
things i say to myself:
i don’t feel bad i don’t feel bad i don’t feel bad i don’t feel bad… shit, i feel fucking bad.
i think i’m getting better. i think it’s better than how i was last month!ย 
i’m strong, i can do this, i.. i have to do this, there is no other way.

stupid things i do to make myself feel less bad.

7c) tried to stop analyzing my skin.
this ties in with the “stop counting the days to healing”.
can you imagine how horrified when i noticed wells in my skin? i have never seen anything like that before!
just keep telling yourself that every abnormal thing you’re going through right now is brought about by the TSW.
THINGS WILL GO BACK TO NORMAL EVENTUALLY.
do get freaked out, but also, please calm yourself down and make yourself feel better by saying “ok this is part of the package, and it’ll be over soon.”.

7d) avoided seeing people (more of avoid being seen by people).
this is rather debatable. it made me feel better because i was overly conscious of my appearance. knowing that no one can see me made me feel so much better already. so i will only encourage this to make yourself feel more at ease, that is if you feel uncomfortable seeing people (and i assume you do feel this way. i mean, who doesn’t??? seriously!?)

i’m not encouraging you to stop seeing people!!! don’t get me wrong. i’m only telling you if this make you feel better, don’t stop yourself from doing it.

7e) remind myself that once i’m healed, my confidence will come back.

7f) let this be a lesson to teach myself that beauty is only skin deep, that there are more aspects to build my self esteem.
this is a bordering a little on the “lying to myself” part because i know how much first impression counts and stuff like that. the thing is, looks matter.
BUT, i have to convince myself otherwise (it’s bloody difficult but please do try!) during TSW because harping on that doesn’t make me feel any better.
so for the duration of TSW, i tell myself that looks are not important.
that what matters is my character..
blablablablabla..
yes it does help to make myself feel a little better.
(now that my skin is back, i can continue to believe in the importance of the outer appearance)

7g) stop dwelling on how bad things are, think of all the love around me.
this is something very very important. it’s one of the things that got me through TSW successfully.
i mean.. i would have killed myself if not for the love i got from my family.
it’s because of them that i stayed on..
if we can take a moment to appreciate all the goodness around us, hopefully it can help us ignore the physical pain that we’re experiencing. hopefully this can help you too.

8. sweat attack!
this happened to me late into recovery, i started perspiring somewhere around the 15th month (i think?).
it was very uncomfortable at first.. but as the skin continues to improve, it becomes less and less of a burden.

8a) limit physical activity.
don’t over exert yourself unless you really have to.

8b) cool yourself down appropriately.
my favourite was stripping down to my birthday suit and standing in front of the fan (in my locked room with curtains drawn), waiting for the sweat attacks to dissipate.

8c) stay away from things that will make you panic.
seeing people makes me panic. knowing that i have to see people makes me panic. seeing a swarm of insects make me panic. seeing mosquitoes on TV makes me panic. seeing flying insects on TV makes me panic. i think that’s about all..

8d) distract yourself during a sweat attack.
focusing on the discomfort will only amplify it. try counting numbers, or listen to a song, sing along to it if you can!

8e) if you’re outside, prepare a good quality tissue paper or handkerchief.
good quality tissue paper so that it won’t disintegrate into bits of white stuff stuck onto your face. an absorbent handkerchief that is soft to touch would be best since it reduces friction on your face. don’t wipe, just pat lightly. if your skin is good already, feel free to wipe! it’ll help exfoliate the epidermis.

——————————————————————-

i just took a look at the word count and it’s at a whopping 3783 words!
it’s already longer than the essay that i have to submit last semester..
to think i had so much difficultly trying to give birth to a 1200 word essay while it’s so easy for me to vomit out all these words now..

i’m amused at myself. ๐Ÿ™‚

i never knew i can take this long to write up an entry.
whoa. 4 hours!?

i’m utterly exhausted now.
don’t forget to let me know of symptoms that i missed so i can share with you how i managed them back then!

xoxo

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30 thoughts on “[special post] how to manage TSW v1

  1. Hi , I love ur blog. Please keep us updated with the pictures and advice. I always wonder how much to moisturizer when I am in the dry peeling stage. It itches and is so tight. Does moisturizer help or hurt in healing? Thanks so much

    Jennifer

    • hi Jennifer, I will assume dry peeling stage to what’s after the oozing phase? at that stage, I used the Vaseline cream (blogged about it earlier on, I can’t recall the name right now!) liberally. as long as it doesn’t sting my skin, I will apply it all over my body whenever I feel dry. if my skin stings, I’ll just stick to petroleum jelly after I shower.

      how much to apply depends on you. I slather it all over myself.

      the key is to reduce irritation to your skin, so if the cream stings your skin, you are not ready for it yet.

    • anyway, thanks for appreciating my blog ๐Ÿ˜‰ I forgot to answer your second question – I am not sure if moisturizers will help or hurt, it is supposed to make your skin feel more like normal skin (by rehydrating it). I believe it’s not suppose to hurt your skin! if it does then your skin is not ready for it yet!

      good luck and god bless!

      xoxo

  2. Hi Juliana,
    This is great stuff!! It really made me laugh (love your sense of humor) and it made me cry with joy that you are healed and actually writing about it. You suffered so much and I worried about you sooo much! What a glorious outcome! Thank you for writing such helpful material. Having been through TSW myself it is incredible to read all the similarities that we all share
    . How anyone could think this condition does not exist is beyond me! Much Love, Kelly

    • KELLY! i’m glad it’s able to make you laugh at the very least. hopefully it can put a smile to all those who’re still suffering right now..

      you’re most welcome, i really want to share my experience with others in hope of easing their discomfort!

      thanks for dropping by ๐Ÿ™‚

  3. Thanks for the great advice Juliana, good luck in your job hunting =)

    I would like to ask is the subsequent flares after the 1st gonna be worst? =/

    • calvin, i can only speak for myself. my 2nd flare was way worse than the 1st one. some others had the same pattern, but not all.

      ๐Ÿ™‚ you’re most welcome! and thanks!

  4. I am amazed by your progress! I too have suffered all my life from AD, and used topical steroids for about 1 year before quitting march of this year. The rebound and withdrawal effects came in full effect during finals and as I was living alone, I was at my lowest. My solution was to fast only on water for 20 days and surprisingly the withdrawal effects improved 90%. While I was crusting prior to the fast all around my mouth and neck, post-fast, it was gone!

    In any case I commend your perseverance!

    – Fellow skin warrior

    • hello there! thanks for the heads up, i’m glad the water fast worked so well for you!! i wish i tried it back then.. :/ then perhaps i wouldn’t have to wait 2 years.

      hope you’re doing much better now! ;D

      • Hey! Im in my 8th day of withdrawl…how many times a day did you wash your face? What did you wash it with? And how did you go about getting a doctors excuse?

      • i only washed it during my shower. i try to limit contact with water as much as possible because it hurts. i washed it with water without any soap or face wash. what do you mean by doctors excuse??

  5. Hi, Juliana,

    Love your post. Have been reading them for a while, great encouragement. I have a couple of questions. Basically, I had a very bad rash on my lips and used steroids on and off for about 9 months. Things never improved. The longest time the lips stay clear is 3 days before I put on steroids. Last November after reading many posts regarding TSW, I stopped using steroid cold Turkey.

    The pustular rash spread from my lips to my cheeks, eye lid, forehead, neck and chest area. Later found out the eczema aggravated due to bacterial infection, I started to use hibiclen. Amazingly, it cleared it up. Unfortunately, the clearance didn’t last long before the next round started with totally different appearance. Now my face is oozing at night, with patches of rash on my neck and keep spreading.

    I know you are not a Dr. But based on what you experienced, do you think I am suffering TSW? I used only 9 months and have stopped for 8 months already. Things are pretty bad most of times. I don’t think I experience any skin-shedding and rarely had a break for the last 8 months. Each time when it bounce back, always with different symptom.

    Thank you very much.

    Susan

    • hi susan, first off.. you can get addicted to steroids within weeks. so 9 months of usage is definitely enough to get you addicted. secondly, the lips has really thin skin, the amount of damage the steroids did to you would probably be more than if you applied on other parts of your skin.

      i can’t say for sure that you have TSW because you do not have a wide spread reaction over your body (because you only applied on your lips), but the rebound reaction is quite classic of steroid usage (and addiction). in fact, all cessation from steroids will result in a rebound reaction. so if i were to say you are probably addicted to steroids, then it implies that you will have a withdrawal when you stop feeding your addiction. right?

      every time my skin flares in the past, it also shows different symptoms. i did question myself if i really have TSW or not, but no matter what the answer is.. the thing i must do is to stop using steroids at all cost.

      my face flared badly at my 8th month and it took another 12 months to look slightly normal again. don’t rush yourself okay?

      you can compare my photos to yourself to see if your symptoms resembles mine..! hope that helps ๐Ÿ™‚

      god bless!

  6. Juliana,
    Thanks for the reply. I’ve learned about Steroid induced Rosacea, another form of TSW. That is why I stopped using steroids against every dermatologists I had seen for the last 8 months. I guess I just need to be patient and hope time will cure it.

    Susan

    • dear susan, stay strong and tough it out! it’ll be worth it eventually. ๐Ÿ˜‰ your body will do what its supposed to, you’re right, you need to be patient!

      god bless!

      xoxo juls

  7. When I said doctors excuse I meant a doctors note that allowed you to stay at home as long as you did!? Unless you didnt have to get one

    • um, i got the doctor’s letter because my school’s adminstration needed it to approve of my leave of absense. i saw a GP and she wrote me a doctor’s letter which says i have severe eczema and has to be exempted from school for a year.

      i don’t really understand the context of your question but i’m assuming you are asking me how did i get approval from school to be on leave of absence.

    • hello esther! it burns all the time until i got used to it..! my body sort of just treated that as the norm. as for stings, it stings when the skin tears open, or when i shower and water touches the open wounds.

  8. for cuts and cracks I used micropore tape ๐Ÿ™‚
    you can also use it on rash hot spots with whatever moisturiser on top to keep it moistened abit longer, also acts as a reminder to yourself to stop scratching.

  9. Hi Juliana, thank you for your sharing and it takes great courage to post pictures of yourself with eczema at its worst. Personally I do not have any skin disorders but find your story inspring. I was just wondering if you have tried pure emu oil on your flare up days?

  10. Hey Juliana, I was linked to your blog by a friend who also went through TSW and is currently what I’m going through as well. Gotta say your story gave me hope about the future. I was wondering how did you stay strong mentally and get through? I know you said don’t count down the days but sometimes it’s just hard not to especially when it feels like it just keeps going on forever and ever!

    • hello ben, i wasn’t strong all the time. i just took it one day at a time. i was lucky i had a break from school and i don’t have to take care of any children or responsibility. it’s easier for me to just recuperate without much stress. it does feel like it’s taking forever.. but.. there’re no other ways.

  11. Hi…Juliana..how are you doing now?hope you at the great moment right now..it took me two days reading all your blog and I would say you’re helping me heal on my broken heart…My son is 26 months and i clearly know now that he is at the process on TSW..I am to blame most part of it cause i am sooo stupid to rely on doctor’s prescriptions without question.I started slattering TS on my son when he is 6 mos. old. I was been told he is having a severe eczema which physicians can’t help only by increasing the amt. of Cortisone to be apply if the last prescribed ain’t working on him….Dec.14 2014..I was run out of this magic cream when my son got his bad flare up..he is sooo red skin all over and cried every moment someone touch him that broke my heart cause that is the first time he pushed me away with so much pain in his eyes…Watching my son every single minute ..when he scratches,skin oozing like crazy,and can’t able to sleep properly at night..Oh Juliana i feel what you’ve been through and so your mom…Thanks God, you overcome all the pain..I am looking forward my son would heal soon as well…and your blog settle me thousand fold of feeling wary what gonna be happen next day to my son since our family Doctor can’t help but giving us higher dose of Hydrocortisone..Wish you all well and more power ..thanks for sharing all you TSW journey.

    • hi christy,

      i’m so sorry to hear about your son’s situation ๐Ÿ˜ฆ thankfully kids grow out of it relatively quickly! and he won’t remember too much of this pain as he grows up to be normal again! just make sure you find out what triggered his first episode of eczema! since he started with skin issues at 6 months, it is most likely related to food, assuming you started introducing solid foods around 6 months!

      he’ll heal up! have faith and stay strong for your son!

  12. Just a word of WARNING here ABOUT ANTIHISTAMINES. Sorry to shout, but I think this matter requires attention. With whole body eczema flaring last spring, I started using otc antihistamines first to sleep, and then the daytime variety against itch because I read that that might help and I was desperate. What a mistake. Now I can’t stop taking cetrizine because whenever I go two days without, my skin starts feeling like it’s on fire. It’s not like your regular itch, but a full-body burning, hurting itch that doesn’t really ever go away. I’m trying to muster courage for quitting antihistamines after my child is born because right now I simply can’t add that stress to my life.

    • thanks for the warning!! the body is capable of being addicted to anything because our bodies will adapt! i believe you can quit it successfully after your child is born! hang in there!!

  13. Hi Juliana I’ve read your whole blog & was inspired by it. Anyway I’m 57 & I stopped using steroids in February 2016. I’m going in my 5th month now & the only problem I really have now is my face. It’s dry, itchy & flaky but it’s white. Now if I put any fragrance free moisturizer on it or even petroleum jelly on it, my face will turn bright red, burn & flake even more. It starts to look like it’s 100 yrs. old. What do you recommend I should do? I think I should just leave it alone but water even seems to dry it out but it doesn’t turn it red. Only moisturizers will do that. I’ve heard some people go through moisturizer withdrawal & that’s helped their skin. Also, my dermatologist gave me non steroid Elidel & I tried it once but that also made it red, then he also mentioned to put a little white vinegar, some ice & water into a bowl & put it on my face for awhile then rinse it off but I’m scared to even try that for fear it’ll turn bright red red. I’d rather have it be a little dry with a few flakes than bright red & lots of flakes. People usually stare at me when it’s like that & it makes me feel unconscious. So what would you suggest? Thank you very much!!!!!

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